Download Platelet News

ITP Conference 2016 Special Edition
The
Platelet News
In This Issue
Message From the
Executive Director
2
Treating ITP: Balancing
the Risks vs. Benefits
4
Top Concerns for
ITP Patients
5
ITP Conference 2016 is Outstanding Success!
Family Fun Event
6
By Caroline Kruse
What Our Friends Are Saying
about the Conference
6
VOL. 18; NO. 2 SUMMER 2016
As one PDSA member and
conference attendee said,
“You’ve set a new standard!”
ITP Conference 2016, which
was held July 8-10 in Orlando,
Florida, was the organization’s
largest conference to date –
with 287 attendees,
representing nine different
countries, including Argentina,
Austria, Canada, Germany,
Mexico, Pakistan, Sweden,
the UK and US. We had 159
(CONTINUED ON PAGE 3)
PCOR: What is it and Why
is it Important to Patients
with a Rare Disease?
8
In Appreciation
8
Walk/Run News
9
Bringing Your Best to Life
and Health Challenges
10
ITP Conference 2016 held July 8-10 in Orlando, FL had a record
turnout with 287 attendees representing nine different countries
and 159 first-time attendees
September is ITP Awareness Month
Join the Movement That’s Gone Global!
By Nancy Potthast
“Awareness is empowering.”
– Rita Wilson
PDSA was founded on the premise that
informed patients would not only have
a deeper understanding of their disease,
but would also have more meaningful
conversations with their doctors to
develop a personalized treatment plan
in managing and living life with ITP.
Less than a decade ago, ITP had no
awareness color, no month to celebrate
the cause, and most people had never
heard the acronym ITP – let
alone the words immune
thrombocytopenia. In just the
past six years, PDSA.org visitors
(CONTINUED ON PAGE 7)
IMPORTANT: The information contained in this newsletter is for educational purposes only.
For advice on your unique medical condition please consult a health care professional.
PDSA Fundraising News
11
Audi Gerstein
Scholarship Recipients
13
Local Support Groups
14
Support Group News
15
Children with ITP:
Treatments, School,
and Sports
16
In Memory / In Honor
17
My ITP Journey
17
ICON Pediatrician Answers
Parents’ Questions
18
What Our Friends Are
Saying on Facebook
19
ITP Pathogenesis: the
Immune System Attack
on our Platelets
20
Can We Cure ITP?
21
Kids Korner
22
Global View
23
A Different View
24
United Way Pledge Time
26
What Our Friends
Are Saying
27
2
The Platelet News
www.pdsa.org
From the Executive Director
It’s been 15 years since the
first local ITP support group
was founded in Cleveland,
Ohio. Encouraged by her
hematologist, Alan Lichtin,
MD at the Cleveland Clinic,
ITP patient Barbara Hise asked
me about starting a local group
together. At the time we
thought that there were local ITP support
groups all across the country. We found
out we were the first group and today
there are 39 local PDSA support groups
across the U.S. and Canada, including a
parents’ teleconference support group
and a Canadian support group.
Due to health issues, Barbara has decided
to ‘retire’ as my co-facilitator of the
Cleveland group. But her legacy, and
that includes her husband Ralph who is
always by her side, will live on through
all of the people she has helped over
the years. Our group met every other
month for 15 years. Sometimes we
would have anywhere from 15-20
people attend a meeting. Sometimes
there were just three or four of us.
I will never forget the time our friend
Susan attended her first ITP support
group meeting. She had fought cancer
of the appendix, breast cancer and
Crohn’s Disease, but she was terrified
that she would have a brain bleed and
die from ITP. After Barbara talked with
Susan on the phone and encouraged
her to attend our meeting, Susan burst
into tears hearing members of the
group share their ITP stories. She knew
she was not alone and that there were
Join…
many different paths to
healing. I’m happy to report
that Susan’s ITP has been in
remission for years and I
know how grateful she is for
Barbara’s support. As I have
said many times, if you can
help just one person then you
have made a difference. And
Barbara has certainly made a difference
in this world.
At this year’s “Pump it up for Platelets”
walk/run at the ITP Conference in
Orlando, our small but mighty group
(due to the Florida heat and humidity
we had to start the event at 7 am!) was
just finishing the last lap of the race
when Board Member Kim Everett called
me over. She was speaking with a young
woman and her husband who were at
the hotel on their honeymoon. They
were out for an early morning walk and
happened to see the PDSA sign and our
purple ITP t-shirts. She told Kim that
she had ITP. We then called a couple of
other ITP patients over to talk with her
and her husband. We shared stories of
our personal ITP journeys and offered
some treatment and support resources.
This woman had been battling ITP for a
number of years and she had never met
anyone with ITP. She was so overwhelmed
that the tears just rolled down her face.
It was a very moving moment and
speaks to the power of PDSA.
Caroline Kruse, Executive Director
Platelet Disorder Support Association
Your valuable donation will enable PDSA to enhance
the programs and services that help those suffering
with ITP and other platelet disorders.
For more information about making a gift of $1,000 or more, contact Caroline Kruse,
Executive Director, at (877) 528-3538 toll free or by e-mail, [email protected].
PDSA Board Members
Peter Pruitt, Chairman, Coral Gables, FL
Jay Charness, Vice Chair, Arvada, CO
Kim Everett, Treasurer, Mishicot, WI
Beth Siegelbaum, Secretary, Norwalk, CT
Karen Avrick, Woodbury, NY
Brian Bamesberger, Loch Lloyd, MO
Jamie Harwell, Helena, MT
Diane Joseph, McLean, VA
Linda McGuirl, Basking Ridge, NJ
Dale Paynter, Cambridge, ON, Canada
Barbara Hise (seated) with members of
the Cleveland ITP Support Group;
Back row L to R: Ben & Mary Ann
Donatelli, Ralph Hise, Ken Kruse
Thank you to sponsor
for supporting
the PDSA Website:
www.pdsa.org
Platelet Disorder Support Association
The Platelet News
Carol Hoxie, Managing Editor
Platelet Disorder
Support Association
Caroline Kruse, Executive Director
Brenda Foster, Administrative Manager
Carol Hoxie, Communication Specialist
Alexandra Kruse, Research Coordinator
Nancy Potthast, Director of Marketing
Jody Shy, Programs & Events Manager
Sue Zemon, Chief Financial Officer
Jeff Cooper, Web site and
Social Media Manager
Joan Young, Founder
The Platelet News
is published quarterly by
A nonprofit organization dedicated to
enhancing the lives of people with ITP
and other platelet disorders through
education, advocacy, research, and support.
For more information contact:
PDSA
8751 Brecksville Road, Suite 150
Cleveland, OH 44141
Phone: 1-87-PLATELET or (440) 746-9003
Fax: (844) 270-1277
www.pdsa.org • [email protected]
PDSA is a 501(c)3 organization.
All contributions are tax deductible.
phone 1-87-PLATELET
ITP Conference 2016 is Outstanding Success!
first-time attendees and PDSA awarded
$24,000 in scholarships to those in need.
With an amazing location just minutes
from Walt Disney World, the Hilton
Orlando Bonnet Creek provided this year’s
attendees with a beautiful setting and
convenient location. They had
opportunities to catch up with old friends
and meet new friends, learn and interact
with the PDSA medical advisors and
speakers. In addition, they could explore
the variety of activities in the local Orlando
area whether relaxing at the incredible
hotel pool with the lazy river, or spending
the day at one of the Disney or Universal
theme parks, which many families did
before and after the conference.
Now in its 16th year, ITP Conference 2016
offered attendees the opportunity to
hear the experiences of other ITP patients,
meet with PDSA industry partners who
were offering the latest information and
resources on a variety of treatment
options and assistance programs, and
talk with world-renowned ITP experts.
They came to hear this year’s program
on topics including: understanding the
risks versus benefits of ITP treatments;
children’s ITP: treatments, school and
sports; women and girls: bleeding
disorders and reproductive issues;
connections between ITP and blood
clots; living with ITP: traveling, surgery
and participating in sports; and updates
on the latest ITP research and new
treatments being developed. The “ABC’s
of ITP: take the Jeopardy Challenge” and
“Communicating with Your Doctor”
where the PDSA medical advisors took
on the role of doctor and patient, were
both informative and entertaining!
In between and after the educational
sessions of the three-day conference,
3
CONTINUED FROM PAGE 1
there was time for interaction among
patients and caregivers at a patient mixer
and ice cream social on Friday night, a
dinner program (including a fun,
interactive quiz) sponsored by Amgen
on Saturday night, followed by our
family fun party with the Caribbean
Crew Steel Drum Band playing calypso
and reggae music. Everyone stayed
around to see if they were the lucky
winners of the many raffles. Our annual
Kid’s Camp provided plenty of crafts,
games and fun while parents attended
programs, and the always popular “For
Teens Only” program was expanded
this year to an additional day and gave
our teens and young adults the chance
to meet and express their creativity
together in a new project.
The weekend wrapped-up on Sunday
with our facilitators’ workshop for
current support group facilitators and
those who were interested in becoming
a facilitator; and a wonderful and
enlightening program on “Bringing Your
Best to Life and Health Challenges”
presented by Jane Ehrman, M.Ed. from
the Cleveland Clinic’s Wellness Institute.
Finally, in an illuminating and moving
panel session three patients shared their
varied stories of living with ITP.
This summer issue of The Platelet News
features Part 1 of the highlights from
this year’s ITP conference presentations.
Part 2 will appear in the fall issue. The
new 2016 Conference flash drive set
with recordings of the conference
sessions is available on the PDSA Web
site in The Platelet Store. For our 2017
conference next July we will be heading
out West to Chandler, Arizona, so save
the date for July 28-30. We hope to
announce details in the next month or
so. We hope you can join us!
Thank you to our 2016 National ITP Conference Sponsors
Platinum Sponsor
Gold Sponsor
Gold Sponsor
Silver Sponsor
4
The Platelet News
www.pdsa.org
Treating ITP: Balancing the Risks vs. Benefits
ITP CONFERENCE 2016 • DRS. DONALD ARNOLD, JAMES BUSSEL, CRAIG KESSLER,
AND MICHAEL TARANTINO
Medical Advisors
Donald M. Arnold, M.D.
McMaster University
Hamilton, Ontario, Canada
By Carol Hoxie
During the ITP Conference 2016
Saturday morning session Drs. Arnold,
Tarantino, Kessler and Bussel presented
four leading ITP treatments, explaining
how the treatments work and possible
drawbacks. Dr. Donald Arnold, of
McMaster University in Canada,
discussed the thrombopoietin receptor
agonists (TPOs) that include Nplate®
(romiplostim) and Promacta/Revolade®
(eltrombopag). Both TPOs increase
platelet production in the patient’s bone
marrow and improve patient’s quality
of life by reducing bleeding symptoms.
He said the TPOs are remarkably safe
and effective. Nplate is given as a
weekly injection, while Promacta is a
daily oral pill. Both Nplate and
Promacta/Revolade have been found to
have a 70-90% success rate of raising
platelet counts. In terms of side effects
for eltrombopag, blood clots were
reported in 5% of patients, while
increases in liver enzymes were reported
in 10%. In the patients on romiplostim,
blood clots occurred in 6.5% and
increases in reticulin in bone marrow
occurred in 6.9%. Overall the TPOs have
been found safe when used long term,
with no major side effects. Dr. Arnold
said we have about a decade of results
now. In about 25-30% of ITP patients
TPO-induced remissions have occurred.
Dr. Michael Tarantino, of the Bleeding
and Clotting Disorders Institute of
Peoria, IL, discussed the pros and cons
Right: At this year’s ITP
conference a panel of
doctors discussed the four
main ITP treatments.
Shown (L-R) Michael
Tarantino, MD; Donald
Arnold, MD; James Bussel,
MD; and Craig Kessler, MD
of intravenous immunoglobulin (IVIg)
as an ITP treatment. IVIg is a sterile,
purified IgG product made from pooled
human plasma. It has been available as
an ITP treatment since 1981. On the
good side, IVIg raises platelets rapidly,
usually in 1-3 days. The platelet-raising
effects last from weeks to sometimes
months. IVIg is usually well-tolerated.
On the bad side, IVIg has a high cost
(thousands of dollars per treatment)
and possible side effects such as
headaches, fevers, or infusion reactions.
These occur in about one-third of
patients. And, IVIg doesn’t stop ITP –
it raises platelet counts temporarily.
Dr. Craig Kessler, of Georgetown
University, in Washington, DC described
using rituximab (Rituxan®) for ITP.
Rituximab is a monoclonal antibody
against the protein CD20, which is found
mainly on the surface of immune system
B cells. This second-line ITP treatment
is infused to humans and affects what is
causing the ITP. It is very effective at
attacking the B cells that turn on the
antibody action that causes attacks on
the platelets. He said the first rituximab
treatment is the most likely to cause an
allergic reaction and occurs in at least
40% of patients. Rituximab has a 50%
response rate and the platelet raising
effect is durable (lasting up to five years).
James Bussel, M.D.
Weill Medical College, Cornell University
New York, NY
Douglas Cines, M.D.
University of Pennsylvania Hospital
Philadelphia, PA
Amy Geddis, M.D., Ph.D.
Seattle Children’s Hospital
Seattle, WA
Terry Gernsheimer, M.D.
Puget Sound Blood Center • Seattle, WA
Andra H. James, M.D.
Duke University • Durham, NC
Craig Kessler, M.D.
Georgetown University Hospital
Washington, DC
David Kuter, M.D., D.Phil.
Massachusetts General Hospital
Boston, MA
Michele P. Lambert, M.D.
Children’s Hospital of Philadelphia (CHOP)
Philadelphia, PA
Howard A. Liebman, M.D.
Norris Cancer Center Hospital
Los Angeles, CA
Diane J. Nugent, M.D.
Children’s Hospital of North Orange
County (CHOC) • Orange, CA
Drew Provan, M.D.
Barts & The London Queen Mary’s
School of Medicine & Dentistry
London, UK
If rituximab is combined with other
(CONTINUED ON THE NEXT PAGE)
John Semple, Ph.D.
St. Michael’s Hospital • Toronto, Canada
Michael Tarantino, M.D.
Bleeding & Clotting Disorders Institute
Peoria, IL
Emeritus
Robert McMillan, M.D.
The Scripps Research Institute • La Jolla,CA
Platelet Disorder Support Association
phone 1-87-PLATELET
5
Top Concerns for ITP Patients: From Fatigue to Vaccines
ITP CONFERENCE 2016 • PANEL FEATURING DRS. DONALD ARNOLD, JAMES BUSSEL, TERRY GERNSHEIMER, CRAIG KESSLER,
DAVID KUTER, HOWARD LIEBMAN, AND JOHN SEMPLE
By Carol Hoxie
The doctor’s panel in this Saturday
conference session discussed concerns of
ITP patients, including blood clots, travel,
and vaccines. Dr. Howard Liebman, of
the University of Southern California,
described thrombosis and risk of blood
clots in ITP patients. Studies from large
patient registries showed ITP patients
were 1.5 – 3 times more likely to develop
clotting problems than the general
population. He said surprisingly ITP
patients can develop clots even if their
platelet count is low. Data from 1990 –
2010 showed that rates of venous
thromboembolism (VTEs) have doubled
in the US. Antiphospholipid antibodies
(which occur in 25-40 percent of ITP
patients) increase clotting risk. There is
a US obesity epidemic and obesity is an
inflammatory disorder. Many ITP patients
are on steroid therapy, which sometimes
leads to a more immobile lifestyle and
increased risk of blood clots.
Autoimmune disorders (like ITP) involve
inflammation in the body, which raises
levels of pro-clotting factors in the blood.
Doctors who discussed top concerns of ITP patients at this year’s ITP conference included:
(shown L – R) Donald Arnold, MD; James Bussel, MD; Howard Liebman, MD; John Semple, PhD;
Terry Gernsheimer, MD; Craig Kessler, MD; and David Kuter, MD
IVIg treatment has been related to higher
risk for clots. What about the TPOs
(Nplate® and Promacta®)? Studies found
that most clotting in ITP patients on TPO
therapy occurred in the arteries. He said
we don’t routinely put ITP patients on
aspirin therapy. Some doctors think they
can’t put ITP patients on anticoagulation
therapy but that is not so. We can treat
clots with low molecular heparins.
Doctors can do full anticoagulation with
the newer anti-clotting agents if the
patient is at 15,000 or higher count. Dr.
Liebman said it’s not a good idea to put in
a ‘filter’ to catch blood clots. In fact, it’s
more likely to cause a clot in ITP patients;
he has seen bad outcomes when used.
A patient in the audience asked whether
the data on ITP and clots applied to adults
and children or adults only. Dr. Liebman
said the registries were primarily adult
ITP patients. There is some minor clot
risk for pediatric patients. Dr. Bussel
mentioned clots were more likely in teen
women than in the pediatric population.
Dr. Terry Gernsheimer, of the University
of Washington at Seattle, discussed travel
concerns for ITP patients. She said plane
(CONTINUED ON PAGE 7)
Treating ITP: Balancing the Risks vs. Benefits
CONTINUED FROM PAGE 4
types of corticosteroids patients may get
a better response. Time to response is
approximately 4 - 6 weeks. The main
drawbacks of rituximab are: it’s expensive
and the first dose must be given with
medical supervision. Before treatment
patients need to be prescreened to rule
out hepatitis B and C. Also, rituximab
cannot be given in pregnancy and a
serious allergic reaction can be fatal.
Dr. James Bussel, of Cornell University, in
New York City discussed splenectomy
for treating ITP patients. In the past,
ITP treatment was usually steroids, then
splenectomy, until IVIg was available in
1981. Most splenectomies today are
done with laparoscopic surgery with
recovery time about 1 - 2 weeks. If a
splenectomy ‘works’ the patient’s
platelet count may increase right away.
He said the highest rate of ITP ‘cure’
with surgery is splenectomy. The
highest rate of cure (long –term
remission) without surgery or ongoing
treatment is rituximab (Rituxan®).
Most ITP patients don’t want a spleen
removal now because it is only
successful at raising platelet counts in
about 60-65% of patients. Prior to the
1980s it was a widely used ITP
treatment. Also, Dr. Bussel mentioned
the possible serious side effects of the
surgery, including bleeding, infection
and blood clots. ITP patients have a 1.5
fold increase in clotting (including
strokes) after splenectomy. Some
patients have developed serious postsplenectomy sepsis (blood infection). A
patient’s platelet count can shoot up
high right after the surgery or it may
‘kick in’ about a month later. Dr. Bussel
said splenectomy patients need to keep
up their vaccines after the surgery.
6
www.pdsa.org
Saturday Evening Family Fun Event
ITP CONFERENCE 2016
The Platelet News
What Our Friends Are Saying
about the Conference
We received many wonderful and
inspiring comments about this year’s ITP
conference in Orlando, FL. Thank you to
everyone who took time to provide PDSA
with your feedback. Here are some
comments we received:
ITP Warriors unite at the premier ITP patient event to make the World #ITPaware!
(Pictured in front row from left to right: ITP Warrior Cassidy Gallo, ITP Warrior Heather Maynard,
PDSA’s Research Coordinator and Circle of Hope member Alex Kruse. Pictured in center row from
left to right: ITP Warrior and Circle of Hope member Aandrea Hays, ITP Warrior and Circle of
Hope member Kristen Hunt, ITP Warrior Joe Ippolito, ITP Warrior and Circle of Hope member
Melissa Hilsabeck. Pictured in back is ITP Warrior and Circle of Hope member Joe Winter)
After a long day of educational sessions, conference attendees warmly welcomed
the Caribbean Crew Steel Drum Band as it filled the air with harmonious sounds of the tropics.
“Another successful conference, full of
support, love and education, empowering
people forward, to fulfill their life’s
dreams and passions. As a board member,
comments from first time attendees and
hugs from repeat attendees, remind me
why Jim and I support PDSA and attend
this wonderful event each year. Honored
to be involved with an organization that
really cares and supports ITP patients in
education, advocacy and research.” – Kim E.
“Worth all the effort to get to 2016
Orlando Conference! Two benefits are the
interaction with others with ITP and the
information. Overload, but hoping some
can be on the Web site to read and digest.”
– Jerry J.
For some, ITP Conference is more
lovingly referred to as the yearly PDSA Reunion
where ITP Warriors and their supporters come
together to celebrate their bonds and connect
with those new to the World of ITP (pictured
from left to right: Susan Paynter, ITP Warrior,
PDSA Board Member and Support Group
Facilitator Dale Paynter, ITP Survivor, PDSA
Board Member and Support Group Facilitator
Kim Everett and Jim Everett).
ITP Warrior
Nathan Weinberger (right) enlists his brothers
Connor (center) and Aiden (left) to champion
the cause and Sport Purple for Platelets!
It didn’t take long for the stimulating pitch of the steel drum and the intoxicating
timbre of the saxophone to get the crowd up and moving with a conga line!
A group steps outside to catch the fireworks display done Disney style!
“This was my first conference. I have had
ITP for 16 years and didn’t know that
there were others like me out there to
talk to. I am so glad I came because now
I know I’m not alone and have numbers
and email addresses of people I can talk
to now. I loved how we could personally
talk to the doctors and ask questions one
on one. I definitely will be attending next
year. Where I live there is no one that has
my condition.” – Adult ITP attendee
“Thank you PDSA for a great
conference!” – Aaron G.
“Good Morning Jody, I wanted to thank
you again for awarding me a scholarship
to attend the platelet conference in
Orlando, Florida. You and the staff did an
amazing job of putting the conference
together. I was able to interact with many
wonderful people that shared their journey
with ITP. I look forward to attending
(CONTINUED ON PAGE 15)
Platelet Disorder Support Association
Awareness Month Links
September is ITP Awareness Month
Upcoming Events
CONTINUED FROM PAGE 1
http://pdsa.org/contribute/raise-awareness-foritp/fundraising-events.html
have increased from 20,000-30,000 to
50,000-60,000 unique visitors per
month from 130 countries. Yes, you
read those numbers correctly – WE’RE
GETTING THERE BABY!
Pump It Up For Platelets! Events
http://itpwalk.org/
Become a Member or
Renew your Membership
http://pdsa.org/contribute/individualmemberships.html
Donate
http://www.pdsa.org/contribute/item/1150.html
Share Your Stories
http://pdsa.org/join-the-community/personalstories.html
PD’s Platelet Push
http://pdsa.org/contribute/raise-awareness-foritp/pd-platelet-push-project.html
Thank you to our
National 2016
Walk / Run Sponsors
Silver Sponsor
Silver Sponsor
Bronze Sponsor
Each year more stories about ITP make
news headlines, more practitioners
learn that fatigue isn’t just in a patient’s
head, more ITP Warriors are educated
with the most recent treatments,
connect with others affected by ITP, and
are empowered by knowledge that gives
them the strength to fight this
frustrating disorder.
IT’S ALL THE RESULT OF AN EFFECTIVE
PARTNERSHIP – a partnership determined
to pave the way to a day when we
won’t recall the time before ITP
Awareness Champions would SPORT
PURPLE FOR PLATELETS and ITP
Warriors would celebrate their trials of
and triumphs over ITP during Awareness
phone 1-87-PLATELET
7
Month. This year, PDSA has joined
together with more than 23 patient
support groups from around the world
to create a global voice for ITP patients
and will celebrate Global ITP Awareness
Week beginning on Monday, September
26th and ending on Friday, September
30th (Sport Purple for Platelets Day).
This September, partner with PDSA and
our comrades around the world in the
fight against ITP – attend an event, paint
those newsfeeds purple, renew or become
a PDSA member, make a donation in
honor of an ITP Warrior, and share your
stories and selfies so we can continue to
get closer to the day when ITP is no
longer an unknown. Visit www.PDSA.org
for information about ITP Awareness
Month, www.GlobalITP.org for
information about Global ITP Awareness
Week, and join the movement in
support of our mission to empower ITP
Warriors in their fight against ITP.
Top Concerns for ITP Patients: From Fatigue to Vaccines
CONTINUED FROM PAGE 5
bleeding while travelling. Bringing
travel is very safe in today’s pressurized
antibiotics, in case of an infection, is a
aircraft. She makes sure her patients have
good idea if travelling in developing
at least a 20,000 count before they travel,
nations where medical care may be
not because it’s unsafe on the plane,
but because their count might fall some
more difficult to get. Be sure to get the
during their trip. ITP
name(s) and contact
patients should wear
information of local
medical
doctors you could see
identification
in the area you will be
bracelets. It is a good
visiting.
idea to bring your
She recommended
medications with
you, as well as a copy
visiting a Travel Medical
of the prescriptions.
Clinic to obtain
She recommends
specialized medical
bringing emergency
advice about endemic
medication, such as
infections and
prednisone, Amicar
appropriate vaccines for
or Lysteda, which
the country you will
Dr. Gernsheimer talks with an attendee
at this year’s ITP conference in Orlando
can help stop
(CONTINUED ON PAGE 12)
8
The Platelet News
www.pdsa.org
PCOR: What is it and Why is it Important
to Patients with a Rare Disease?
ITP CONFERENCE 2016
By Alex Kruse
In addition to showing videos of
patient questions before sessions,
providing a just-for-teens track, and
creating new patient-centered research
framework and priorities during the
2016 ITP Conference, PDSA had the
pleasure of introducing a representative
from the Patient-Centered Outcomes
Research Institute (PCORI), Dr. Danielle
Whicher, to educate patients about the
significance of Patient-Centered
Outcomes Research for rare diseases.
The Patient-Centered Outcomes Research
Institute promotes research that emphasize
hypotheses answering critical questions
from patients and caregivers. They
focus specifically on generating results
that can be easily applied to patients
and specifically underscore the
importance of engaging patients
throughout the research process. They
believe that patient-engaged research
will culminate in findings that will be
increasingly utilized in a clinical setting.
What exactly is Patient-Centered
Outcomes Research? PCOR investigates
commonly used treatment options of a
clinical disease in a real-world setting.
It fills evidence gaps such as “are there
different ways of managing the clinical
condition of interest? Is it difficult to
choose? Do different doctors recommend
different treatment approaches?” Most
importantly, patients are involved in
research design and conduct, ensuring
that the investigation provides solutions
to vital patient questions. PCOR
answers the question “which of the
available options is best and for which
patients?” and produces evidence that
helps patients, caregivers, and physicians
make more informed healthcare decisions.
Patient-Centered Outcomes Research is
especially crucial for patients with rare
diseases such as ITP. Considering that a
cure for ITP has not yet been discovered,
there tend to be differences in the way
this disorder and its symptoms are
treated in a clinical setting. While it’s
wonderful that patients have a plethora
of therapy options, questions still
remain regarding the best method to
treat ITP. In this scenario, utilizing the
main tenets of PCOR to develop studies
that contribute evidence on the best
way to manage the disorder will
considerably influence patient and
caregiver quality of life. Ultimately,
PCOR will be invaluable for PDSA and
ITP patients, as the development of
patient-centered studies will surely yield
meaningful information on the best
way to manage ITP for each patient.
Celebrate ITP Awareness Month with
20% off in the Platelet Store!
Visit The Platelet Store:
https://www.pdsa.org/
products-a-publications/
the-plateletstore.html#!/AwarenessItems/c/4339024/
offset=0&sort=normal
20% discount applies only to purchases made in September (excluding Conference USB flash drives)
In Appreciation
The following individuals were active
members of the CIRCLE OF HOPE
between April 1 and June 30, 2016. Circle
of Hope members donate or raise $1,000
or more within a calendar year and serve
as PDSA’s philanthropic leaders.
April – June, 2016
Emily Auterson • Andrew Avrick • Karen
& Adam Avrick • Cindy & Philip Ayliff
• Kenda & Brian Bamesberger • Kim &
Robert Barber • Amita & Ranjive Bhalla
• Brendan Cameron • Leilani de Castro
• Audrey & Jay Charness • Barry Deutsch
• Rachel & Patrick English • Robert Feiner
• Allison & Keith Flowers • Susan Frank
• Jan & Steve Gardner • Terri & Michael
Goldberg • Wanda Gregory • Jen &
Benjamin Grimes • Kim & Rodney Hall
• Kristin Henrikson & Jon Brandt • Noelle
& Mat Heyman • Melissa Hilsabeck
• Madeline & John Hromyak • Kristin
Hunt • Karen & David Imig • Anne &
Pitkin Johnson • Joan & Richard Jordan
• Diane & Robert Joseph • Sharon Kaye
• Emily & Kris Kile • Louise Kittel
• Alexandra Kruse • Caroline & Ken Kruse
• Irene & David Kuter, MD, DPhil • Paula
Lagree • David Lihani • Jenn & Andy
Lindal/For the Love of Gracie • Kristie Lyons
• Mary Lou & James Lyons • Eleonore &
Russell McCabe • The McGuirl Family
• Irma & Daniel Miles • Kim & Bobby Moore
• Stephanie & Mike Moran • Colleen
O’Hara & Doug Mashkuri Charitable Fund
• Jeanne & Dan Pinnell • Rae Ellen
Pistone • Nancy & Michael Potthast
• Jacqueline & Bruce Prescott • Meredith
Prescott • Barbara & Peter Pruitt, Jr.
• Shirley & Peter Pruitt, Sr. • Patricia Pulley
• Angela Racoosin • Virginia Rennie
• Jennifer & Joseph Roberts • Martha
Roberts • Steven Rodgers • Karen
Rosenbaum • Trish & Paul Santaromana
(CONTINUED ON PAGE 17)
Platelet Disorder Support Association
phone 1-87-PLATELET
Walk / Run News
Summer Pump It Up For Platelets! Events
VISIT WWW.ITPWALK.ORG TO FIND A LOCATION NEAR YOU!
By Nancy Potthast
Ames, IA Pump It Up For Platelets! • Event Date: June 11, 2016 • Total Raised: $4,525
Read Hayley’s ITP Journey: http://pdsa.convio.net/site/TR?fr_id=1130&pg=informational&sid=1022
Morgan (L) and Brayden (R) Shimanek, sons of event organizer and ITP Warrior,
Hayley Shimanek take a break from helping Mom with the festivities to enjoy a game of bean
bag toss.
ITP Warrior and event organizer, Hayley Shimanek (L) sharin’ the love with
sons Morgan (center), Brayden (right front) and husband Nathan (right back).
The growing
group of Ames, IA ITP Awareness Champions pose for the camera at the 2016 event.
Orlando, FL Pump It Up For Platelets! • Event Date: July 8, 2016 • Total Raised: $4,732.80
Read Andrew & Sydney’s ITP Journey: http://pdsa.convio.net/site/TR?fr_id=1160&pg=informational&sid=1022
Event organizers Karen Avrick (L) and her son, Andrew Avrick (R) respectfully pose with a space for their
missing team member, Sydney Avrick. Karen is a PDSA Board Member, Circle of Hope Member and all three members
of the Avrick family are ITP Warriors! Sydney could not be present at the 1st annual event due to a scheduling conflict,
but did a great job rallying the troops in the fight against ITP!
A PDSA banner hung freely under a tree on the steamy
morning of the Orlando event, stopped a passer-by dead in her tracks
and then brought her to tears. The young woman enjoying the last
morning of her honeymoon had lived with ITP for years and thought
she was all alone…not anymore.
Up and at ‘em!
ITP Awareness Champions were up at the crack of dawn for the first
annual ITP Conference Pump It Up For Platelets!
9
10
The Platelet News
www.pdsa.org
Bringing Your Best to Life and Health
Challenges
ITP CONFERENCE 2016 • KEYNOTE SPEAKER: JANE PERNOTTO EHRMAN, M.ED.
By Carol Hoxie
At this year’s conference Keynote
presented on Sunday, Jane Pernotto
Ehrman, M.Ed., a Mind/Body Medicine
Specialist at the Cleveland Clinic’s
Wellness Institute discussed what
contributes to your best life. Ms. Ehrman
is certified in clinical hypnotherapy and
Interactive Guided ImageryTM. She helps
clients transform their health and life
challenges, including chronic illness,
into opportunities for healing and
personal growth.
She said, “You see the world through
how you feel.” She illustrated that idea
by showing a short video of buses,
trains, traffic, messy streets and hectic
activity set to a loud, cacophonous
music soundtrack. She contrasted that
same video set to the beautiful classical
music of Pachelbel’s Canon. The first
video provoked a stressful reaction in
those who watched, while the second
brought about a peaceful, calm feeling.
She said the music colored your
perception and, “Your perception is
your reality.” If we are always ‘waiting
for the other shoe to drop’ in our lives,
we live in a chronic state of stress.
She said hope has healing power and is as
important as medication and treatment.
It gives us courage to confront our
situation and the capacity to overcome
obstacles. She also said the biology of hope
is that a change in our mindset alters the
neurochemistry in our brain cells.
We need to strive to be as ‘healthy’ as
we can for ‘as long as we can.’ We must
ask ourselves, “What will I do or change
to get the best life possible?” There are
three key areas we have to look at
including nutrition, physical activity, and
stress relief. In terms of nutrition, while
cookies, ice cream, chips, and candy
taste good, they don’t offer much support
for good health. The Mediterranean
Diet has been proven effective. It includes
lots of vegetables (not deep-fried), 4-5
servings of fruit/day, fish and lean
poultry and less red meat and fried food.
To improve our physical activity, we
need to get out of our chairs, stop
watching television as much, walk a
little more, just get moving. Buying a
pedometer that measures steps taken
has been shown helpful to get people
walking more each day. We are
encouraged to aim for 10,000 steps a
day, though most sedentary people only
achieve about 2,000 – 3,000 steps per day.
Meditation, mindfulness, sensory
awareness, yoga, prayer, and journaling
are all proven ways of finding stress
relief. Meditation brings brain changes
including increased brain structure and
function. Meditation produces a
relaxation response that decreases O2
consumption, respiratory rate, heart
rate, blood pressure, and muscle
tension. It increases alpha waves in the
brain. Research shows that meditation
reduces inflammation, a powerful
benefit to our health. Ms. Ehrman
recommended the book The Relaxation
Response, by Herbert Benson, MD., a
classic reference recommended by many
health care professionals and authorities
for coping with stress. She said 60% of
doctors’ office visits are stress related!
At this year’s conference in Orlando, FL
keynote speaker, Jane Pernotto Ehrman,
M.Ed., shared information and many ways
to improve quality of life and health while
coping with a chronic illness
Ms. Ehrman listed some questions to
ask yourself about your life and health:
1.
2.
3.
4.
5.
6.
7.
8.
She said we have to focus on relaxation
and fun activities. What do you do for
fun? When was the last time you really
had fun?! Also, practicing an ‘attitude of
gratitude’ benefits our health and outlook.
Think of three good things that happened
today. Ask ‘what part did I play?’ Name
the positive things of the day. It only
takes three minutes a day. In a study, after
participants did this for two weeks, their
mood was elevated as much as people
on Prozac and other antidepressants.
Which of my perceptions about my
disease, my life, and myself are
barriers to my being well?
What am I willing to do differently,
or stop doing, to become a
healthier person?
What can I learn about myself from
this experience?
What can I learn about life from this?
Where do I have ‘control’ in this
situation?
What brings me joy and is life-giving?
What no longer serves me
(in relationships, responsibilities,
and activities)?
With this new information, what
are my goals?
Ms. Ehrman ended her presentation by
leading the audience in a short group
mindfulness meditation exercise that
led to decreased stress levels and more
relaxation for everyone. She provided
handouts with detailed instructions for
relaxation exercises. For more
information be sure to visit her Web
site, http://www.imagesofwellness.com/.
Platelet Disorder Support Association
Alex Kruse Pounds the
Pavement for Platelets!
By Caroline Kruse
The Cleveland Rite Aid Marathon on May
15, 2016 was one for the record books!
Race officials reported that in its 39-year
history, this year’s event provided the most
grueling weather conditions – 35 mph
winds, rain, sleet, hail and snow. Despite
battling the elements, Alex Kruse finished
her first half-marathon, 13.1 miles, in
under 2 1/2 hours and came in 3,400 out
of 12,000 people. Alex’s goal was to
finish the race and raise awareness about
ITP and funds for PDSA. She did all three
and raised over $3,000 for PDSA programs
and research. Alex wrote down the names
of ITP patients that are near and dear to
her heart and kept those slips of paper in
her pocket. She said each mile she would
look at her list that kept her motivated to
finish the race. Way to go Alex!
phone 1-87-PLATELET
11
PDSA Fundraising News
2016 Awareness Champion Team
Intensifies in Support of ITP Warriors
By Nancy Potthast
The starting line-up of awareness champions continues to grow as they inspire,
share and make the world #ITPAWARE! Do you or someone you know run, cycle or
participate in community fitness events? Join our team of Awareness Champions!
Contact PDSA’s Programs and Events Manager, Jody Shy at [email protected] for more
information and to set up your personal fundraising page and get started today!
EVENT
ORGANIZER(S)
LOCATION
AMOUNT
Key West Half Marathon
Cheri Zimmerman
Key West, FL
$4,080.19
Maple City Savings Bank
Hornell, NY
$232.00
#FASTRUBY
The Tillinghast Family
Lincoln, NE
$100 to-date
Lagree Fundraisers
Paula Lagree
McCormick, SC
$100 to-date
Cleveland Half Marathon
Alex Kruse
Cleveland, OH
Tri-Beta Bio Honor Society
Jennifer Roberts, PhD
Romeoville, IL
Linda’s Angels
Nicole Novello
Bellmore, NY
$245.28 to-date
Lugo Fundraiser
John Camera
Brooklyn, NY
$500.00
August Challenge
Tammy Fassett
Bothell, WA
$3,165.50
$825
$108.90 to-date
Virtual Walk
Kristie Lyons
Oak Ridge, NJ
Bravelets
Linda Hanson
Decatur, GA
$655 to-date
$40 to-date
Pennies for Platelets
Cade Kleisner
Neenah, WI
$200
For a complete list of fundraising events, visit:
http://pdsa.org/contribute/fundraising/fundraising-events.html
Top left: ITP Warrior, John Camera
(second from left) standing proud with
his team of Awareness Champions,
Matthew (Matty) Guarino, Andrew
Langshultz, and Matthew Velasquez
(pictured from left to right) at their
fundraising and ITP education stand.
These guys hit it out of the park raising
$500 for PDSA programs and research!
Bottom left: Raffle items from the
Lugo Fundraiser adorned with purple
for platelets!
Neither rain, wind, sleet or snow could
stop Alex Kruse from completing her first
half-marathon, The Cleveland Rite Aid
Marathon, held May 15, 2016 and
raising over $3,000 for PDSA
programs and research
PDSA is a 501 (c)3 nonprofit
corporation. All contributions are tax
deductible to the extent of the law.
PDSA receives NO federal funding.
12
The Platelet News
www.pdsa.org
Top Concerns for ITP Patients: From Fatigue to Vaccines
CONTINUED FROM PAGE 7
be visiting. There has been a large
increase in travel to developing nations
by immunocompromised patients.
Immunosuppressive ITP medications
include: prednisone, azathioprine,
cyclosporine, and rituximab. Prednisone
makes patients more susceptible to
bacterial and fungal infections;
azathioprine can interfere with your Tcells and B cells, cyclosporine inhibits T
cell activation, and rituximab produces
a marked reduction in B cells.
Dr. Gernsheimer shared basic vaccination
information. She said inactivated
vaccines all have the same safety profile.
There is no evidence that inactivated
vaccines cause ITP flares, although there
has been some debate about the MMR
vaccine. Even if you have a flare, it is
likely to be less serious than getting the
disease you are trying to avoid. Live
attenuated vaccines have a potential
risk for vaccine-related effects if you are
on immunosuppressive medication. It’s
best to get vaccinated at least a month
before being exposed to what you are
trying to prevent.
Most of us know about the pneumococcal
vaccine (it’s inactivated). If you’re
travelling anywhere we recommend that
vaccine, as well as annual flu vaccine.
If traveling to the Southern hemisphere,
remember that flu seasons are reversed
from the US and get your flu vaccine
accordingly. Hepatitis A is endemic in
many developing nations. You may also
want to get gamma globulin to increase
immunity. Check to see if Hepatitis B is
endemic in the area you’ll be travelling
to. If on immunosuppressive agents you
want to avoid live attenuated vaccines
until you are not on those meds. Even
if you’ll be in a country just a few days,
it is important to think about malaria
prevention, especially if you’ve had a
splenectomy. Without a spleen you
can’t clear the bacteria and are very
susceptible to illness.
Dr. Gernsheimer said ITP travelers need
to be aware of the issue of traveler’s
diarrhea. In addition to the regular
concerns about dehydration, there is
the worry about getting bacteria in your
blood. Be sure to replace fluid loss and
carry antibiotics with you in case of an
infection. There is about a 50%
reduction in traveler’s diarrhea if you
take Pepto-Bismol tablets while
travelling in developing nations where
water and food may not be what your
system is used to in the US or Canada.
Dr. David Kuter, of Harvard University,
discussed vaccinations in patients who
have had their spleen removed. He
described the spleen as the largest
lymphoid tissue in the body and the
major organ that produces blood cells
in the 3 – 9 month fetus. It’s a reservoir
for our T lymphocytes and also plays an
active role in the production IgM
antibodies. The spleen filters blood to
remove damaged/old RBC (red blood
cells) and serves as a secondary
lymphoid tissue by removing infectious
agents, using them to activate
lymphocytes (white cells).
The spleen, which filters abnormal cells,
is especially good at removing
encapsulated bacteria (streptococcus
pneumoniae; haemophilus influenza,
type B; and Neisseria meningitides). An
encapsulated bacterium has a thin
candy-type shell around it that coats it
making it harder to destroy. These three
bacteria are handled well by the spleen.
Patients without spleens have a higher
risk of infection.
There is also risk of overwhelming post
splenectomy infection/sepsis with fever,
chills, chest pain, muscle aches, headaches,
vomiting and diarrhea, drop in blood
pressure, and in some cases shock,
coma and death. Death rate from sepsis
is about 50%. Fortunately, vaccinations
are available for these three bacteria.
Dr. David Kuter and Dr. John Semple were
speakers at this year’s ITP conference in Orlando
Dr. Kuter shared a Centers for Disease
Control (CDC) chart (available online)
showing the vaccine schedule:
http://www.cdc.gov/vaccines/schedules/dow
nloads/adult/adult-schedule.pdf
As to timing, for elective splenectomy,
patients should get vaccinations at least
14 days prior to the surgery. If it’s an
emergency spleen removal, patients
should get the vaccines on or after 14
days post-surgery. If the patient had
received recent rituximab treatment,
the vaccine should be given 6 months
or later after surgery.
Patients without spleens need
vaccinations for Streptococcus
pneumoniae (Pneumovax 13, PCV13,
Prevnar, or Pneumovax 23), for
Neisseria meningitides, and for
Haemophilus influenzae b vaccine.
In summary, these are Dr. Kuter’s
suggestions for patients without spleens:
•
Get vaccinated
•
Follow the vaccination schedule
and get revaccinated per the schedule
•
Keep a small supply of penicillin
VK 500 mg at home (unless allergic
to penicillin)
•
Get to your doctor immediately if:
your temperature is higher than
101.5, you have shaking chills
(rigors), you experience confusion
or mental status changes, and you
have a spreading skin rash
Platelet Disorder Support Association
phone 1-87-PLATELET
13
14
The Platelet News
www.pdsa.org
PDSA Local Support Groups
PDSA has support groups across the United States and Canada and new groups continue to form. Listed below are existing groups
with meeting dates. No group listed in your area? Consider forming a group and becoming a facilitator. We’ll provide you with
a New Facilitator Kit to help you get a group started. Just contact Jody Shy at [email protected] or call toll free at 1-877-528-3538.
For information on meeting locations, dates, and times please contact the group facilitator.
ITP PARENTS TELECONFERENCE GROUP
CHICAGO, ILLINOIS
CINCINNATI, OHIO
Facilitator: Jay Charness, [email protected] or (303) 731-7731
2016 Meetings: October 5, December 7
Facilitator: Trish Santaromana,
[email protected] or
(630) 292-1485, http://chicagoitpsupport.org
2016 Meetings: November 5
Facilitators: Mary and Mark Griffith,
[email protected] or (513) 922-4255
CLEVELAND, OHIO
Currently looking for a Facilitator
PEORIA, ILLINOIS
OTTAWA, ONTARIO - CANADA
Facilitator: Shanna Beard, [email protected] or
(390) 692-5337
Facilitators: Barbara Hise, fourstrings@
ameritech.net or (216) 310-3926 and Caroline
Kruse, [email protected] or (440) 526-0629
2016 Meetings: September 8, November 10
BOSTON, MASSACHUSETTS
DAYTON, OHIO
CANADIAN TELECONFERENCE GROUP
Facilitator: Livia Chyurlia and Vanessa
Clermont, [email protected] or
(613) 612-9689
WATERLOO-WELLINGTON, ONTARIO CANADA
Facilitator: Dale Paynter,
[email protected] or (519) 651-2352
Facilitator: Michael Westfort,
[email protected] or (508) 366-1073
or (508) 930-0309
DETROIT, MICHIGAN
Facilitator: Tina Garland,
[email protected] or (937) 643-1705
POWHATAN POINT, OHIO –
SOUTHEASTERN OH/WV
Facilitators: Sharon Cisco and Linda Galka,
[email protected] or (586) 783-8014
Facilitator: Camie Sims,
[email protected] or (304) 816-2608
NEW! ST. PAUL, MINNESOTA
PHILADELPHIA, PENNSYLVANIA
LOS ANGELES (SIMI VALLEY), CALIFORNIA
Facilitator: Joe Winter,
[email protected] or (651) 792-5277
Facilitators: Nina and Stephanie Schussman,
[email protected] or (818) 370-8877
POCONOS, PENNSYLVANIA
OMAHA, NEBRASKA
PHOENIX, ARIZONA
Facilitator: Bunnie Stevenson,
[email protected] or (480) 451-7661
ORANGE COUNTY, CALIFORNIA
Facilitator: Heidi Green, [email protected]
or (402) 498-3826
Facilitators: Melissa Hilsabeck & Leilani de Castro,
[email protected] or (714)598-7102
CENTRAL / NORTH NEW JERSEY
PATTERSON, CALIFORNIA
Facilitator: Carla Nelson,
[email protected] or (209) 892-8813
SACRAMENTO, CALIFORNIA
Facilitator: Linda McGuirl, [email protected]
or (908) 764-1819
2016 Meetings: September 17, November 19
NORTH NEW JERSEY
Facilitators: Dawn and John Phillips,
[email protected] or (916) 607-1699
Facilitator: Dianne Danielle, [email protected]
or (201) 265-8875 and Lanie Gastman,
[email protected] or (201) 592-1181
SAN DIEGO, CALIFORNIA
SOUTH NEW JERSEY
Facilitator: Susan Pounder, [email protected]
or (858) 217-6587
WASHINGTON, D.C.
Facilitator: Cindy Ayliff, [email protected] or
(703) 849-0054
MIAMI, FLORIDA
Facilitator: Michael Vitale, [email protected]
CAPITAL DISTRICT (ALBANY AREA),
NEW YORK
Currently looking for a new facilitator
LONG ISLAND, NEW YORK
Facilitator: Barbara Pruitt,
[email protected] or (305) 409-6887
Facilitator: Claudia Montuori,
[email protected] or (718) 725-2645
NORTH FLORIDA
TRIANGLE, NORTH CAROLINA
Facilitator: Irene Xynides-Rincon, xynidesi@
bellsouth.net or (904)710-9055or (904)823-9055
Facilitators: Donna Goldstein,
[email protected] and Emily
Goldstein, [email protected] or (919) 942-4082
Currently looking for new facilitator
Facilitator: John Catalano,
[email protected] or (917) 892-4264
NEW! RHODE ISLAND
Facilitators: Lisa & Steve Sack,
[email protected] or (401) 884-5711
CHATTANOOGA, TENNESSEE
Facilitator: Sharon Putnam,
[email protected] or (423) 991-6450
NASHVILLE, TENNESSEE
Facilitator: Charity Hasty Backs,
[email protected] or (615) 473-3372
2016 Meetings: November 12
AMARILLO, TEXAS (PANHANDLE)
Facilitator: Robin Abshire, [email protected]
or (337) 296-7052
DALLAS FORT WORTH, TEXAS
Facilitators: Linda and Kris Dorasami,
[email protected] or Linda (817) 727-2351
or Kris (817) 727-2361 and Marsha Inman
(817) 249-5391, [email protected]
2016 Meetings: August 27
SEATTLE, WASHINGTON
Facilitator: Joan Coppolino,
[email protected] or (770) 924-2258
2016 Meetings: August 27
CHARLOTTE, NORTH CAROLINA
Facilitators: Tammy Fassett, [email protected]
or (206) 465-3451 and Taylor White,
[email protected] or (253) 250-5873
2016 Meetings: October 23
Facilitator: Carol Mullis,
[email protected] or (704) 843-2734
MILWAUKEE, WISCONSIN
SOUTHEAST, GEORGIA
RALEIGH, NORTH CAROLINA
Facilitator: Patricia Johnson,
[email protected] or (229) 247-0699
Facilitator: Amy Prokopowicz,
[email protected] or (919) 280-0872
ATLANTA, GEORGIA
Facilitators: Kim Everett, [email protected]
or (920) 755-8430 and Trudy Sensat,
[email protected] or (414) 202-6291
2016 Meetings: October 22
Platelet Disorder Support Association
What Our Friends Are Saying
about the Conference
CONTINUED FROM PAGE 6
another conference in the future.
Thanks again!” – Donna J.
“PS Enjoyed the food and the
entertainment as well!”
“Had a wonderful time. Lots of love and
knowledge. Thanks for all the hard work.”
– Rhonda W.
“Nancy, These are great! I love your
Awarenessgram! All of the work you do
means so much to the ITP community.
I am constantly meeting new faces whose
lives have been touched in a positive way
by PDSA! The emotional support and
power of positivity, hope and spreading
the word that blossom from the roots of
PDSA are truly remarkable, and we have
you all to thank for that!”
“Thank you so much for sharing these
conference photos. I’d love to share them
on our Web site and Facebook page with
your approval. Let me know what you
think. Have a lovely rest of the week!”
– Amanda C., Bleeding & Clotting
Disorders Institute
“Here we have found hope and love and
a community of support.” – from #2016
conference attendee and mother of an
ITP warrior #ITPaware
“Thank you so, so much for having me
at the conference, and sharing my video.
This weekend has definitely been one
I will never forget!!” – Katie E. M.
“Dr. Semple’s presentation was a fantastic
and unique way of explaining how our
immune system works and functions.”
– Jennifer S.Q.
“It was great!! Thank you for
everything!!” – Shannon S.C.
“Great conference! Great information!
PDSA is a great organization! Thanks for
all you do for ITP patients and families!”
– Adult ITP attendee
phone 1-87-PLATELET
15
News from Our Support Groups
Our support groups are the grassroots that help us BUILD STRENGTH THROUGH
SUPPORT and ADVANCE ADVOCACY THROUGH EDUCATION. When you share
your personal stories with others, you give hope to those who may have felt all alone
in dealing with their ITP. We hope you will find comfort in knowing that whether you
are part of a meeting to listen, talk or both that you are not alone. We encourage you
to make your medical providers, family and friends aware of our numerous resources
that help make the World ITP a more manageable place to be. It’s this strong network
that will continue to create awareness, educate, and advocate. Here are some
inspirational stories and news we’ve received from our support groups recently.
To share your group’s news, please contact Nancy Potthast at [email protected]
Parents ITP Teleconference
Support Group
Facilitator: Jay Charness ([email protected]) or (303) 731-7731
Milwaukee, WI Support Group
Facilitators: Kim Everett
([email protected]) or (920) 755-8430
and Trudy Sensat ([email protected])
or (414) 202-6291
The April snowstorm proved no match
for the Milwaukee, WI support group,
so why would a July heatwave?!
Despite the extreme weather, the group
celebrated another wonderful turnout
to welcome new folks and returning
members, share stories of ITP journeys
and enjoy co-facilitator Kim Everett’s
report on ITP Conference 2016 in
Orlando, FL! What does Mother Nature
have in store for when they gather
again on October 22nd?
The ITP parents had a great
teleconference call on June 1st with
several families joining in on the call.
The first 30 minutes were dedicated to
the kids giving them time to share
together their ITP and life experiences.
Then parents on the call had an
outstanding question and answer session
with ICON pediatric hematologist
Dr. Michael Tarantino, Director of the
Bleeding & Clotting Disorders Institute,
in Peoria, IL. Questions and answers
from the call are printed in this issue of
The Platelet News. Following the Q&A
session, parents discussed a number of
other topics of concern for their
children. The next teleconference calls
are scheduled for August 3rd and
October 9th, 7 pm EST.
Orange, CA Support Group Meeting
Support Group Facilitators’
Workshop Breakfast
Reported by Nancy Potthast
Facilitators: Melissa Hilsabeck & Leilani
de Castro ([email protected])
or (714) 598-7102
This year’s Sunday morning Facilitator
Workshop and Breakfast at the 2016
ITP Conference in Orlando, FL
welcomed 15 attendees from the US,
Canada, New Mexico and Argentina!
Be sure to check out the listings of our
two new support groups in Rhode
Island and St. Paul, Minnesota.
The Orange, CA Support Group held its
networking support group meeting on
July 20th, in Laguna Niguel, CA. There
were 12 attendees including eight adults
with ITP and four family members/
friends. Those who attended introduced
themselves and shared their ITP
experiences. Some key topics discussed
(CONTINUED ON PAGE 17)
16
The Platelet News
www.pdsa.org
Children with ITP: Treatments, School, and Sports
ITP CONFERENCE 2016 • PARENTS Q&A SESSION WITH DR. JAMES BUSSEL
By Alex Kruse
Q: My young daughter was recently
diagnosed. Any tips for sores that don’t
seem to heal? Any time she forms a
scab it rubs off and bleeds!
A: When a patient with a bleeding
disorder gets cut and the wound
reopens, it will generally bleed more
than it did initially. Being on steroids
can delay immunity and healing. ITP
patients could also have low white or
red blood cells, which is called “Evans
Syndrome.” To avoid having the scabs
rub off, put Band-Aids on for protection
and keep an eye on your child to ensure
she’s not picking at her scabs.
Q: At what count can kids play sports?
A: It depends on the sport. The most
commonly played “safe” sports are
swimming, track, baseball, and soccer.
Most injuries incurred during sports are
standard sprained ankles, etc., which
your child could get regardless of his
platelet count. Unfortunately, be
prepared for more bruising on your
child than on your child’s teammates.
Keeping their count above 30,000 is
fine for most sports, but if they want to
play tackle football their counts need to
be above 50,000.
Q: I’m a patient with ITP for 2.5 years.
My platelets are staying up with Rituxan® –
how long can I expect this to last?
A: Rituxan is a monoclonal antibody
that knocks out your B cells, decreasing
the production of anti-platelet antibodies
that attach to your platelets and marking
them for destruction. Rituxan works in
30-50% of patients and typically lasts
over a year; half of these patients will
relapse between 1-2 years after initial
treatment. If the platelet response is not
as strong (<50), the treatment will likely
last six months and then relapse.
Q: My son had one dose of Rituxan a
year ago, but had severe serum sickness.
Can we give him Rituxan again?
A: Rituxan is a part-mouse part-human
monoclonal antibody. Sometimes patients
experience immunological reactions to
the mouse part of the antibody,
resulting in serum sickness accompanied
by a viral infection, fever, rash, and joint
inflammation. Although it’s easy to treat
the serum sickness with steroids, Rituxan
should not be given again because of
the new antibodies against Rituxan.
Q: Our daughter has taken IVIg,
steroids, Rituxan, and most recently,
Promacta®. She was losing her hair, was
nauseous and moody, and had headaches.
Is that something other patients deal
with? What’s the difference between
Promacta and Nplate®?
A: Nplate and Promacta try to stimulate
production of platelets in the bone marrow,
whereas the other treatments mentioned
try to reduce platelet destruction. Promacta
is given daily by mouth and Nplate is
given weekly as a subcutaneous injection;
they seem to work similarly. If Promacta
has been keeping her counts up she should
try Nplate instead because of the side
effects. There has been anecdotal data that
suggests that if you try Promacta or Nplate
and it doesn’t work, you can still try the
other. This is because each drug binds
to different parts of the TPO-receptor,
meaning one interaction may work
better than the other for different people.
Attendees at this year’s conference in Orlando
had lots of choices at the Platelet Store
In terms of side effects, hair loss and GI
symptoms such as nausea and diarrhea
are very uncommon. Muscle aches can
happen with both agents but seem to
be more common with Nplate.
Sometimes IVIg can cause headaches
and irritability; if she takes Promacta
or Nplate and it raises her count to
30,000-50,000 IVIg isn’t necessary.
Q: My doctor says that your bone
marrow can be affected by Promacta,
is that true? What are some of the
important risks of taking TPO agents?
A: Sometimes stimulation of
megakaryocytes can leak scarring
(healing) agents in platelets, but it’s
reversible and is extremely rare in
patients. To monitor scarring, we used to
perform a bone marrow biopsy before,
one year, and two years after treatment;
the results were clinically irrelevant.
TPO agents are safer in kids for a number
of reasons and most serious side effects
don’t seem to occur frequently. Clotting
can occur more in adults as their blood
vessels aren’t as healthy as they are in
children. Abnormal cells can arise in the
marrow, elevated liver tests can become
an issue, and cataracts can form; although
you can’t say that there isn’t any risk at
all, chances of these adverse events
occurring are extremely low in pediatrics.
Q: Our son was diagnosed as a teenager
and chose more of a natural perspective
to healing. What is your opinion?
We’ve used papaya leaf enzymes,
wheatgrass, natural healing, etc. and his
platelets have stayed up.
A: The use of natural remedies is very
controversial because of the way that
some research is conducted considering
the data is not as rigorously acquired.
For example, studies on Promacta and
Nplate are typically double-blinded and
(CONTINUED ON PAGE 25)
Platelet Disorder Support Association
In Memory
My ITP Journey
We received contributions from April 1,
2016 to June 30, 2016 in memory of:
By Barbara Link
Jane Kreuch
Gracie Lindal
Warren Munash
Georgia Padaetz
Paige Roberts
Nora Spann
Pamela Ann Yukihiro
In Honor
We received contributions from April 1,
2016 to June 30, 2016 in honor of:
John Camera
Mary Ingmire
John McEwan, Jr.
Kevin Sherman
Sara Wijnen-Riems
Aubrey Williams
If you are considering an honorarium
donation, please contact PDSA, 8751
Brecksville Road, Ste. 150, Cleveland, OH
44141 or [email protected] or call
1-87-platelet (1-877-528-3538) toll free.
phone 1-87-PLATELET
17
And then they “fixed”
As a fatherless kid I was
me and I no longer felt
often teased for having
fine. Four tries: two
“bad blood” and in my
12-hour IVIgs that
60’s that became true.
required blood pressure
Initially, I thought the
tests every 30 minutes
horde of ‘freckles’ creeping
and turned my arms a
up my feet and legs was
deep bruised black;
just another old-age thing,
steroids that gave me
but when they appeared
hallucinations, jitters
where the sun don’t shine, I
and the munchies; four
decided to seek a medical
ITP patient Barbara Link
6-hour Black Boxed
opinion. Along with the
has been through a lot
infusions that required
zillions of freckles (purpura),
on her ITP journey
me to sign off on the
I had more bruises than
knowledge they could kill me during
normal but being a klutz, I gave them no
the infusion; and finally a brand new
thought. Upon hearing the doctors and
pill that is now keeping me at half-staff
nurses discuss calling for an ambulance,
(half low normal, so no playing with
I said a prayer for that poor soul.
knives). Hallelujah!
Then they came into my room and
For children this ITP is truly horrible
identified me as having a horrendously
as every bump and fall can be life
long named, life threatening bleeding
threatening and for those with poor
disorder where my immune system
insurance, stuck on inexpensive
destroyed my platelets faster than they
steroids, their life is miserable! The
could be made. Next they explained
medication I am on is not covered by
that those freckles were pools of blood
Medicare as, apparently at my age, I’m
leaking from my veins…What?! They
expendable…ahem. Even dogs can get
actually plotted a safe route to the
this orphan (under funded)
hospital, ordered me to not go home,
autoimmune bleeding disorder! I
not buy a magazine, not stop for lunch,
wonder how they see their freckles?
not hit a pothole, not get in an accident,
and try not to sneeze! Yet I felt fine.
In Appreciation
CONTINUED FROM PAGE 8
• John Semple, PhD • Kimberly & Ronald
Sewald • Hayley & Nathan Shimanek
• Jody & Jon Shy • Jennifer Slad • Michael
Tarantino, MD • Jill & Matt Tillinghast
• Lois Umhoefer • Elizabeth & Robert Welch
• Stephanie Zane, Esq. • Cheri & Derek
Zimmerman • Joyce & Dale Zimmerman
If you have any questions about the
CIRCLE OF HOPE, please contact
PDSA at (877) 528-3538 or visit
www.pdsa.org/hope to learn more.
News from Our Support Groups
CONTINUED FROM PAGE 15
in this meeting were: being sick and
having higher platelets (some have
noticed this occurs for them), a diet for
blood types book, the stress of waiting
between CBC tests to check their
platelet counts, and the importance of
wearing medical id bracelets. They were
informed about the upcoming ITP
conference in Florida, reminded that
they can request Hematologist Packets
to share with their hematologist, and
told they can order the recording of
the 2016 Conference sessions through
the PDSA office or PDSA Web site.
The group is planning a Pump It Up
for Platelets 5K event on Sept. 18th.
The group plans to meet again in
September. Watch for details!
18
The Platelet News
www.pdsa.org
ICON Pediatrician Dr. Michael Tarantino
Answers Parents’ ITP Questions
By Carol Hoxie
PDSA’s ITP Parents’ Teleconference Support Group call was held June 1st. Parents on the call asked their
questions of ICON pediatric hematologist and PDSA Medical Advisor, Dr. Michael Tarantino. He is
Professor of Pediatrics and Medicine at the University of Illinois-Peoria College of Medicine and Director
of the Bleeding & Clotting Disorders Institute (BCDI), in Peoria, IL. At the BCDI Dr. Tarantino has been
involved in the diagnosis and management of children and adolescents with blood diseases, including
ITP. He has been caring for children and adults for over 25 years and been involved in many clinical
trials, including for Nplate® and Promacta® treatment for ITP.
He is a Site Investigator for ICON (ITP Consortium of North America), a collaborative research effort
dedicated to improving the understanding, treatment, and quality of life of pediatric ITP patients. ICON
is pleased to partner with and work in collaboration with the Platelet Disorder Support Association (PDSA).
Pediatric
Hematologist
Dr. Michael Tarantino
answered parents’
questions during
the June 1st
teleconference call
Here are the questions and Dr. Tarantino’s answers.
Q: I read that Rituxan® was included in
a list of ‘The 50 Most Dangerous Drugs.’
What can you tell us about using
Rituxan for ITP?
A: Rituxan (rituximab) is used in adults,
often as a front-line drug, and
commonly as a second-line drug when
steroids don’t raise platelets well. In a
study with Dr. Bussel (multicenter) of
many people, about half of the kids
responded to Rituxan. Serum sickness
in some went away when the
medication was stopped. About 12%
had a lasting response past one year.
An encouraging pediatric study in Italy
used a modified dosing. Typical dosing is
one treatment/week for four weeks. In
Italy they gave 1 or 2 doses, or up to 5
doses. They found two doses are as good
as four. If the patient responded after 2
doses, they could stop the treatment.
Another study found that patients who
had at least some response to Rituxan
predicted increased likelihood of good
response to splenectomy. Also, repeated
treatment with Rituxan is warranted if a
child responded to the first set of
treatments. If they didn’t respond at all
it is not likely they will respond to
Rituxan if they try again.
The main side effect from Rituxan is
serum sickness. A more serious, though
rare, side effect is PML (progressive
myofocal leukoencephalopathy) which
causes problems with the brain. However,
PML really hasn’t been a problem in
children receiving Rituxan. Honestly,
with approval of Promacta (and Nplate
pretty soon), Rituxan has moved from a
second-line treatment for kids with ITP
to a third-line treatment.
Q: My son went through treatment with
Rituxan. He didn’t respond well to the
treatment. Is there a predictive index?
A: In a Neufeld, Bussel, and Nugent paper
a low Rituxan response was approximately
equal to a low response to splenectomy.
I would probably try Promacta
(eltrombopag) before Rituxan. At the end
of a long-term study of Nplate in kids with
ITP, about 10-15% went into remission
with at least 50,000 platelet counts.
A: First-line includes IVIg, steroids
(prednisone), and anti-D (WinRho in
the US, Rhophylac in Australia).
Q: Is IVIg just temporary in its outcome?
A: IVIg can be given over and over
again if needed. In both anti-D
(WinRho) and IVIg the platelet count
goes up rapidly in kids with very low
counts and bleeding. The average
length of time a treatment works is
about a month (3-4 weeks). The nice
thing is in most kids ITP will resolve
itself in six weeks to six months. Some
kids experience infusion reactions,
including fever, chills, or headaches.
Remember every medication has side
effects. Prednisone has a long list of
side effects. Rituxan only works in half
the kids and it takes several weeks to
kick in and get platelet counts up. It is
not a fast-acting treatment.
Q: What about remission from
treatment with Promacta?
A: Their (Novartis) study is collecting
information. Their ‘adult’ data found
about 20% were going into remission
ranging from two months to two years.
Promacta was approved for use in
adults in 2009 and just approved in
2016 for children with ITP.
Q: If Rituxan is a third-line treatment,
what about other treatments?
Q: Could you please explain about
‘treating the symptoms, not the platelet
count?’
A: Doctors have debated whether we
need to ‘treat’ kids with low counts if
they don’t have bleeding symptoms. A
study that used a registry of kids who
had rare bleeding inside the head asked
‘where is that threshold?’ What count is
the dangerous count? Bleeds in the
(CONTINUED ON THE NEXT PAGE)
Platelet Disorder Support Association
What Our Friends Are Saying
on Facebook
PDSA has a Facebook page that provides
a direct online forum for comments and
sharing news and information about ITP,
treatments, and the ups and downs of
having this platelet disorder.
If you LOVE PDSA, then be sure to:
www.facebook.com/plateletdisorder
Note: The views expressed are personal
experiences and are not endorsed by PDSA.
Here are some recent comments we’ve
received on our Facebook page:
“My platelets may not be within the
normal range, yet I was told by my
hematologist ‘my platelets are young and
big yet get the job done (clot).’ I’ve got
Hercules platelets!” – Diana C.
“I was on steroids, platelet transfusions,
IVIg, Rituxan, and splenectomy. Then more
Rituxan. Nothing was getting my numbers
over 15,000. Then Nplate. Now I’m blessed
to have numbers over 250,000 and I have
been healthy now for over a year.
Sending blessings to all of you.” – Jen M.
“Nplate was also the only drug that
helped my daughter have a consistent
count above 10,000 for almost nine
months. Near the end of her treatment,
we also started her on mycophenolate
mofetil (MMF) and now have been able
to maintain counts of about 60,000 since
March on MMF alone. Nplate was really
her turning-around point for living a
normal life, finally.” – Michelle Thomson
“For those in the US who can connect to
a vaccine, both children and adults, there
(CONTINUED ON THE NEXT PAGE)
phone 1-87-PLATELET
19
ICON Pediatrician Answers ITP Parents’ Questions
CONTINUED FROM PAGE 18
brain are fatal about one-fourth of the
time and, even if not fatal, may cause
deficits in the child’s brain (about a 1%
chance of intracranial hemorrhage/bleed).
to see if there were bone marrow changes.
Their conclusion: there wasn’t a
difference in the marrow after Promacta.
Q: Our child with ITP started having
I start treatment if the child’s count is
under 10,000. According to British,
German, and Asian guidelines you
don’t need to treat ITP unless there are
bleeding symptoms. French and US
guidelines indicate that at less than
10,000 count we treat. I don’t agree with
the British and German guidelines. Ask
your doctor if she/she would treat your
child if the platelet count was 10,000 or
less. Ask them more questions about that.
Q: How often should our child with ITP
have their platelet count checked?
A: Whether to test depends on the
‘trend’ and what their symptoms are. If
their count after no treatment is dropping
60,000/week I check frequently. If it’s at
50,000 and stable for months I will
check it less often. If the child reports
unusual fatigue, I will check the count.
Q: What are the side effects of
eltrombopag (Promacta/Revolade)?
Are there any findings on how long to
be on that medication? Our child has
had a splenectomy.
A: Novartis (company that markets
Promacta) hasn’t shared their long-term
data (except for the PETIT study in
kids). About 10-15% got some irritation
in the liver. We haven’t seen cataracts
in kids. I have heard of two cases of
blood clots in teens (one was on birth
control pills). The study was 52 months
and as far as we know nothing bad
affected patients after several years on
Promacta. In a study of 22 kids (Orange
County, CA and NY) with two-year use of
Promacta, the objective of the study was
her periods. She has started using
Lysteda® for menstrual bleeding and
other bleeds (nose). Can Lysteda be
used for any kind of bleeding?
A: Amicar® has been around for 50
years and can be used for all types of
bleeding. Lysteda was approved in
2009. In 2011 the indication (only one)
was to treat heavy menstrual bleeding.
However, we use the drug (Lysteda) ‘off
label’ for other bleeding, especially
when Amicar was in short supply and
Lysteda works the same way.
Q: Is there a big difference in prices for
Amicar vs. Lysteda?
A: A bottle of Amicar is $1,300, while a
bottle of Lysteda is $100. Specialty
pharmacies can acquire Amicar and sell it
to patients for whatever their insurance
company will pay. In my opinion, it’s
criminal the way a company has ‘inflated’
the cost of Amicar and its generic.
Q: What is the correlation between
feeling ‘run down’ and the platelet count?
A: It’s often reported that having
fatigue is there but we still don’t have
the biological reason for it; no firm
conclusions so far. Platelets are
reservoirs for serotonin. Platelets being
‘cleared’ in ITP means serotonin is less
available. Another theory is that ITP is a
pro-inflammatory disorder, such that a
low count means more inflammation
leading to more anti-immune activity
and resulting in more fatigue.
For further information on ICON, visit
http://icon-itp.org/
20
The Platelet News
www.pdsa.org
ITP Pathogenesis: Understanding the
Immune System Attack on our Platelets
What Our Friends Are Saying
on Facebook
CONTINUED FROM PAGE 19
ITP CONFERENCE 2016
By Alex Kruse
In Friday’s ITP conference session, “ITP
Pathogenesis,” PDSA medical advisor
Dr. John Semple compared our immune
system function to the military, and
answered the question: “How do we
make an immune response against our
own platelets?”
Here is how he explained the roles of
some of the important military
members (immune system):
The General: CD4+ T Helper Cells.
Initiate an attack (immune response)
and continue it. Originate in the bone
marrow, attend military school and
study weapons (antigen affinity) in the
Thymus. They were awarded in military
school for “precise recognition of danger
and foreign weapons” (antigen activation)
and “multi-tasking” for helping or
retreating the troops (immune response).
The General’s Wife: CD4+ T Regulatory
Cells. Regulate the General and halt the
attack. The General and his wife met in
the Thymus and continue to work
together in the Spleen; the General’s
wife easily settles his aggressiveness and
desire to attack (induces tolerance).
The Colonel: CD8+ T Cells.
Responsible for binding to and killing
the enemy (viruses) and won an award
for hand-to-hand enemy destruction
(cytotoxicity) in the Thymus military
school, where they learned not to attack
their own military (immune system).
The Captain: B Cells. Responsible for
the production of supplies (antibodies)
and won the award in Bone Marrow
military school for best student sniper
(specific immune response).
Privates: Macrophages. The privates are
trained everywhere (in all tissues). They
attack anything and warn the General of
danger (antigen processing and presentation).
In a well-functioning military, platelets
have a lifespan of 10 days. As they age,
the privates recognize old, wrinkled
platelets and eat them. The private then
presents old platelet weapons (antigens)
to the General, but the General’s wife
tells him not to react as the platelet
doesn’t pose any danger. When the
enemy (a virus) is present with foreign
weapons (antigens), it activates the
private. The private captures the enemy,
presents his weapons to the General, the
General’s wife hides (lack of suppression),
and the Captain is recruited to prepare
enough supplies (antibodies) to attack
the enemy. If the enemy returns, the
General calls upon the Colonel who
remembers and kills the enemy.
In a dysfunctional military (autoimmunity
in ITP), the General’s wife is very sick.
As a result, the General can’t think
straight and loses his tolerance. When
the enemy arrives, it is attacked by the
private; he informs the General of
danger and the General recruits the
Captain to prepare a surplus of supplies
against the enemy. Because of the
Captain’s overactivity and lack of
regulation from the General, some of
the supplies are used to wrongly attack
all platelets. Although the Colonel was
originally recruited to destroy the
enemy, he notes some of the supplies
have been assigned to attack and
destroy the platelets in the spleen
(this is what causes high rates of platelet
destruction!). The same Colonels can
infiltrate the bone marrow and wreak
havoc on megakaryocytes (this is a
potential cause of decreased production).
Dr. Semple’s excellent use of a military
analogy helped expand our
understanding of what goes wrong in
our immune system that results in
attacks on our platelets in ITP.
is VICP Vaccine Injury Compensation
Program and claims go through the
Vaccine Court. Vaccines covered for
compensation are listed on the Vaccine
Injury Table. Research these topics as you
will find more links at each website.
I filed as an adult and my claim was
approved and compensated.” – Jerry J.
“I had Rituxan and it did well for four years.
I too was diagnosed at age 35. I am now
55 and just starting Nplate.” – Michele J.
“I had a serious reaction to Rituxan and
ended up in the hospital for a week.”
– Susanne B.
“I wish the Rituxan worked for me – it
worked for a friend – and I’m so glad one
of us is out of this. I’m on Promacta now;
I hover in the high 20,000’s / low
30,000’s …” – Tara C.
“Rituxan worked for me – my platelets
level is over 200,000 for the past four
years.” – Valrie A.
“Talk him into Nplate before splenectomy.
My son’s treatment included a splenectomy
and Rituxan, plasmapheresis, you name it
they tried it. Nplate worked after Rituxan.
But the treatment, especially the
splenectomy, left him without immunity.
He passed away in March from an
infection – less than 24 hours after feeling
ill. He had no defense. Please only do a
splenectomy as last resort. Nplate put him
into spontaneous remission for two years.
We were celebrating that milestone and
then suddenly he was gone.” – Christine F.
“So sorry for your loss Christine. My son
had his spleen removed when he was
nine and is now 19. We tried everything
(CONTINUED ON THE NEXT PAGE)
Platelet Disorder Support Association
What Our Friends Are Saying
on Facebook
CONTINUED FROM PAGE 20
phone 1-87-PLATELET
21
Can We Cure ITP?
Research that Considers Patients’ Needs
ITP CONFERENCE 2016
and he had many bleeding episodes so
it was our last resort. His platelet count
has been above normal for the past nine
years. I agree everything should be tried
before the spleen is removed. If anyone
is considering spleen removal you must
be vigilant after the removal. Any
temperature, sniffle or sneeze we are at
the doctor or ER. There is no waiting until
tomorrow. It was also recommended he
get a meningitis and pneumonia shot
forever. Without a spleen infection
spreads so fast and sometimes it’s too
late no matter how vigilant you are.
It even has a name – post splenectomy
septicemia.” – Jenifer M.
“So sorry. There are still a lot of doctors,
nurses, paramedics, and other health
professionals not familiar with this
disorder. All of us who deal with this will
have to continue educating as many
people as possible about this. Prayers to
your family.” – Robert G.
By Alex Kruse
At this Saturday session at the ITP
Conference, PDSA Medical Advisors
Drs. Craig Kessler, James Bussel, and
David Kuter revealed emerging research
and clinical trials for ITP. First, Dr.
Kessler, of Georgetown University,
explained the pathophysiology of ITP,
demonstrating that each step of platelet
production and destruction can be
recognized as a potential therapeutic
target, which provides better and more
tailored care for ITP patients.
Dr. Bussel, of Weill Cornell Medical
Center, addressed three new therapies:
Fostamatinib (from Rigel), PRTX-100
(from Protalex), and cycling
dexamethasone and rituximab
(Rituxan). Fostamatinib blocks signaling
of the macrophage to bind to an antiplatelet antibody. It’s currently in phase
3 of clinical trials to examine toxicity
and patient response; phase 2 trials
yielded 50% response in those who had
failed to respond to prior therapies.
PRTX-100 binds IgG molecules limiting
platelet destruction; open label trials
only started recently, although good
responses and few side effects with low
doses of the drug have been observed.
Cycling dexamethasone and rituximab
has produced good responses in 70% of
patients with a normal platelet count
lasting over a year. It is important to
note the addition of two new antiCD20 antibodies similar to rituximab:
ofatumumab and obinutuzumab. These
also inhibit B lymphocyte activation,
reducing the total number of cells
available that produce platelet-coating
antibodies, marking them for destruction.
Patients who have had bad reactions to
rituximab cannot use the drug again.
Ofatumumab and obinutuzumab could
be administered instead if that was
deemed the best option for care.
Dr. Kuter, of Massachusetts General
Hospital, discussed the development of
the novel agents anti-CD40 ligand
antibodies and FcRn pathway
inhibitors. Anti-CD40 ligand antibodies
(IDEC-131, phase 2) reduce the
production of anti-platelet antibodies.
CD40 regulates immune response and is
elevated in inflammatory diseases;
when CD40 is inhibited, activation of B
cells is decreased as well as presence of
proinflammatory antigen presenting
cells. IDEC-131 has thus far provided a
good response in clinical trials;
however, some patients experienced
unexpected thromboembolism.
Researchers have noted that blood clots
can be prevented by modifying the Fc
receptor. Development for FcRn
pathway inhibitors have been underway
as well. FcRn is vital for IgG lifespan and
protects the antibody from degradation.
When FcRn is blocked, pathogenic IgG
antibodies are degraded, T-cell
activation is inhibited, inflammation is
blocked in response to IgG, and
clearance of anti-platelet antibodies
that attach to platelets promoting
platelet destruction is increased.
Use AmazonSmile® to Support PDSA
Circle of Hope members, Jim and Kim
Everett, from Wisconsin, at the ITP
conference in Orlando, FL
AmazonSmile is a simple and automatic way to support your favorite charitable organization
every time you shop, at no cost to you.
Visit here for complete AmazonSmile program details:
http://smile.amazon.com/gp/charity/pd.html/ref=smi_ge_uaas_pd_pd
22
The Platelet News
www.pdsa.org
Kids Korner
Kids’ Camp Offers Fun and Support for Kids Affected by ITP
ITP CONFERENCE 2016
By Emily Innes, PDSA Intern
Kids with ITP had a great opportunity for fun and friendship at this year’s Kids’ Camp at the ITP Conference held in Orlando, FL
For a child suffering from ITP, it is all too
easy to feel isolated. A chronic illness
such as ITP affects every aspect of life,
often preventing children from taking
part in some childhood activities. Many
parents can feel helpless watching their
children tiptoe through their lives, but
take comfort in the services PDSA
provides for such situations. PDSA grants
access to an entire community of ITP
patients, including children, teenagers,
and adults. The lives of children (and
parents) are changed for the better
because of PDSA’s support system, and
they are able to find a lifestyle not
limited by their illness.
At PDSA’s 2016 annual conference in
Orlando, the Kids’ Camp showed children
with ITP that they are not alone. While
offering a welcome distraction from the
hardships of daily life through various
arts and crafts, the camp also provides an
important opportunity for friendship
between kids who all have something
unique in common. This year’s camp was
run by Kristin Hunt of Quebec, Canada,
and Melissa Hilsabeck, of Orange, CA,
who both have had ITP since their
teens. They started the Kids’ Camp and
have run it for the past five years. PDSA
greatly appreciates their support and
help, which has made such a difference
for ITP kids.
With their parents
attending the various
discussions and
presentations of the
conference, 12
children reported to
the Kids’ Camp for a
weekend of delightful
diversion. The kids
worked with a wide assortment of arts
and crafts supplies, and had a blast
making shell crowns, Popsicle stick flags,
and bead sun-catchers. They also colored
in the coloring books created especially
for the Kids’ Camp by Lauren Hoxie.
By participating in the camp, these
children are granted a foundation for
a new outlook on life when coping
with a chronic illness. They – and
their families – return home with an
optimism for the future and a sense of
comfort knowing
they have a strong
support system
and that they are
not alone in their
journeys.
Got Needlephobia?
PDSA is proud to offer this free
program available to kids with
ITP in the U.S. and Canada who
are members of PDSA.
Visit www.pdsa.org/resources/
itp-poke-r-club.html for details!
Kristin Hunt (L) and Melissa Hilsabeck (R)
organized and ran this year’s Kids’ Camp
If you have an
interesting story
or news about a
child/teen with ITP,
please send to PDSA
at [email protected]
or mail to: PDSA,
8751 Brecksville
Road, Suite 150,
Cleveland, OH
44141.
Platelet Disorder Support Association
phone 1-87-PLATELET
23
Global View
PDSA’S SUPPORT REACHES BEYOND THE U.S. — HERE IS A SAMPLING OF NEWS
AND NOTES ABOUT AND FROM OUR INTERNATIONAL FRIENDS
PDSA at EHA in Copenhagen,
Denmark
By Caroline Kruse
PDSA participated in the 21st Congress
of the European Hematology Association
(EHA) in Copenhagen, Denmark, June
9-12. More than 10,000 participants
travelled from around the world to
Copenhagen to take part in networking
opportunities and attend educational
and scientific sessions on the latest data
in blood disease pathogenesis and
treatment research. The topics ranged
from stem cell physiology and
development, leukemia, lymphoma,
myeloma, red blood cells, white blood
cells, and of course platelet disorders:
thrombosis and bleeding disorders.
Several programs during the four-day
meeting were focused on ITP. On the
opening day of the EHA Congress, the
Satellite Symposium “Immune
thrombocytopenia (ITP) and aplastic
anemia (AA): Our current understanding
and what the future might hold” was
presented by Dr. Nichola Cooper from
Hammersmith Hospital in London, UK,
who updated the audience with the
latest information on pathophysiology
and treatment of ITP. Dr. John Grainger
from Royal Manchester Children’s Hospital
in Manchester, UK, discussed treatment
of pediatric ITP. Both Drs. Cooper and
Grainger are medical advisors to the ITP
Support Association in the UK.
On Saturday, Platelet Disorders were
front and center including the latest ITP
research by two of PDSA’s medical
advisors: James Bussel, MD, and Douglas
Cines, MD. Dr. Bussel presented the
program “Final Safety and Efficacy Results
from the EXTEND Study: Treatment
with Eltrombopag in Adults with
Chronic Immune Thrombocytopenia,”
which concluded that eltrombopag
treatment:
• Increased average platelet levels to
>50,000 in two weeks and
maintained them at 50,000 over
long-term treatment.
• Response rates were higher in
nonsplenectomized patients and
those with fewer prior treatments,
although heavily pretreated and
splenectomized patients still had
good rates of response.
• WHO grade 3 + 4 bleeding events
were infrequent. These events
include any bleeding requiring a
red blood cell transfusion, organ
dysfunction with symptoms, fatal
bleeding, retinal bleeding with
visual impairment, nervous system
impairment, and hemodynamic
instability such as hypotension,
a drastic drop in hemoglobin, or
significant decrease in blood pressure.
• Nine patients (3%) were withdrawn
for Hepatobiliary Laboratory
Abnormalities in the liver,
gallbladder, or bile duct, and four
for cataracts.
• No additional safety
issues were observed
with median treatment
of more than two years.
Melissa Eisen, MD, global
medical lead for Amgen,
presented research on
behalf of Dr. Cines,
“Romiplostim in
Splenectomized and
Nonsplenectomized
Patients with Immune
Thrombocytopenia,”
which concluded that:
•
In splenectomized
patients, platelet
response rates to
romiplostim were
Anjali Sharma, MD and Melissa Eisen, MD of
Amgen, PDSA Medical Advisor James Bussel, MD,
and PDSA Executive Director Caroline Kruse
•
lower, use of rescue medications
was more frequent, and rates of
hemorrhage and infection adverse
events were higher.
Overall, platelet response rates with
romiplostim treatment were high
in both splenectomized and
nonsplenectomized populations;
new safety issues or major increases
in adverse events were not seen in
either patient cohort.
Other hot topics at this year’s Congress
included enhancing patient engagement
through patient advocacy groups and
European Reference Networks (ERN),
platforms for clinicians and researchers
to share expertise, knowledge and
resources across the EU. These
initiatives will ensure that the patient
voice is heard in the development,
programming, and
evaluation of ERN
activities and improve
clinical outcomes and
quality of life in people
living with hematologic
diseases. This is parallel to
PDSA’s new
collaborations with the
Patient-Centered
Outcomes Research
Institute (PCOR) and the
National Organization of
Rare Disorders (NORD).
PDSA Executive Director
Caroline Kruse and Karin de
Boer board member of the
ITP patient group in the
Netherlands
PDSA joined other global
ITP support groups from
Brazil, Denmark, Italy,
the Netherlands, Slovakia
(CONTINUED ON THE NEXT PAGE)
24
The Platelet News
www.pdsa.org
A Different View
Unusual Success Stories from Our Mailbox
The information in this section is a personal view. It does not represent an endorsement by PDSA or its
medical advisors. For advice on your unique medical condition, please consult your health care provider.
I was diagnosed with ITP in 2012 and
have been on a low dose of prednisone,
doing well with platelets hovering around
90,000 the last half of 2015. This past
January I went downhill with multiple
symptoms – breathing difficulties, swollen
hands and feet, fever, aches, and heart
palpitations. The initial diagnosis was
bronchitis, then pneumonia, and then a
visit to the ER! Finally the rheumatologist
recommended a lupus test.
Starting with unexplained symptoms as
far back as 2009 – enlarged lymph nodes,
ITP in 2012, and these recent symptoms,
the rheumatologist finally solved the
mystery with the positive lupus test
results. Now the meds for treating lupus
have my platelets at 200,000. Although
the classic lupus symptoms were not
evident (rash, light sensitivity), the
other similarities were there. So I would
recommend a lupus test. It might solve
your mystery! – Sheila H.
There is always someone out there
worse off than you. I was first diagnosed
with ITP in 1996. I had a splenectomy,
but that didn’t help. I still have a blood
draw every month to monitor my
platelet count. It has never been over
80,000, but my hematologist is pleased
as long as it doesn’t go below 50,000. I
look forward to your newsletters and
appreciate the work you do. I always
say, “We can send a man to the moon,
but can’t solve the mystery of ITP.”
Global View
And here is my dumb question… I would
love to have one of those tee shirts
about “Pump it up for Platelets,” and
want to know where I could buy one.
I would proudly wear one to bring
increased public awareness of ITP.
Most people I talk to never heard of it.
I am 88 years young, and still kicking.
Again, thanks for all you do! – Edna S.
I am sending my greetings to everyone
at the PDSA conference. I’ll be 66 on
June 21, and I am an ITP patient of
hematologist Dr. Mala Varma, in New
York City at Mt Sinai West. I was
diagnosed in July of 2013 with a count
of 45,000. My platelet count fluctuated
between 19,000 and 185,000 for most
of 2014. I had a sinus infection late
December 2015 and fortunately
noticed, with excellent support and
education from Dr. Varma, some minor
bleeding in my nose. I alerted Dr.
Varma in early 2016. Lab tests resulted
in a platelet count of 1,000. Dr. Varma
sent me to the emergency room, where
I was treated with WinRho® and a 5-day
hospital stay with increasing count to
124,000 at time of discharge. Follow-up
labs at the end of January showed a
relapse to 63,000, followed by a slight
rebound to 86,000 in early February.
Thank you to PDSA for your support!
– Stan K.
In the meantime, probably within a
week of discharge, I started a near
gluten free diet. I had perused the PDSA
Web site for a few years, and the
If you have an unusual success story
to share, we’d like to hear it.
Send your letters to A Different View,
PDSA, 8751 Brecksville Road, Suite 150,
Cleveland, OH 44141,
or via e-mail to [email protected].
Letters may be edited for length and clarity.
booklets for adults and children with
ITP and our “Coping with ITP” booklet
were very popular and all gone by the
end of the meeting.
Hi friends. Hope you are all well. My name
is Leron Lahav. I am 37 years old, from
Israel. I was diagnosed with ITP in Nov.
2015 and was hospitalized for 35 long days
with 2000 platelets. Since then I am
treated and stable for now. Probably there
CONTINUED FROM PAGE 23
and the UK, to spread awareness at the
advocacy booth where we had our free
educational booklets available to
hematologists from around the world.
PDSA’s English, Spanish and French
“Diet Pages” had remained in my
subconscious. It took the relapse to
1,000, medication, and a hospital stay
for the great information on the PDSA
site to kick in the idea in my mind of a
gluten free diet. I started the gluten free
diet after a 65-year diet of bread, pizza,
spaghetti marinara, lasagna, and
granola. My platelet count has steadily
risen to normal and stabilized with two
recent readings at 173,000 since starting
the gluten free diet. (Actually, I am
about 90-95% gluten free because small
amounts of gluten sneak into my take
out soup. I may also get some gluten
from scraped off cheese on a pizza,
which I might nibble. However, for the
most part I purchase gluten free cookies
and I just had an Italian deli make me
gluten-free lasagna. I don’t eat bread,
wheat, etc. My diet change has been
significant, and the PDSA Diet Pages
have been most valuable. My new goal
is to adopt some of the other healthy
concepts to continue my improvement
in other areas of my diet.
(CONTINUED ON THE NEXT PAGE)
Platelet Disorder Support Association
phone 1-87-PLATELET
25
Children with ITP: Treatments, School, and Sports
CONTINUED FROM PAGE 16
the results are mixed; some professionals
have claimed that they treat their patients
with a naturopath drug and it “works
in all of them,” that is statistically
unheard of. That doesn’t mean that
naturopath drugs don’t work, it just
means the overall results are unclear.
The other issue is that the FDA recently
performed a study on naturopathy drugs
and many didn’t actually contain as
ingredients what they claimed to contain.
In general, the problem with most
treatments is that a lot of different drugs
work for different people, so how to
figure out what will work best for your
child is unclear. The relationship between
naturopathy and allopathy/osteopathy
is very complex and controversial and
perhaps the biggest thing patients and
physicians might disagree on.
Q: Our daughter’s counts are usually
between 20-60. How often should we
take her for a CBC? It’s very emotional
for her to get her blood drawn.
A: There’s a new movement in pediatric
ITP to not worry as much about the
platelet count and consider the symptoms
instead. If your daughter is over 20
most of the time and isn’t bleeding, you
can take her in monthly. There’s no
good answer, and that’s something that
you and your doctor have to discuss.
Q: If my son complains of a headache
after bumping his head, when should I
be worried about a brain bleed? When
should I take him to get tested at the
Global View
Emergency Room?
A: If your child
Q: Can you give your
complains of a headache
and is vomiting, losing
consciousness, and has
had bleeding symptoms,
they could have a brain
bleed and you should
take them to the ER. In
terms of testing, a CT
scan can emit a lot of
radiation so make sure
your child receives a
head MRI instead.
opinion on first line
treatments for those who
have been recently
diagnosed?
A: Prednisone is very
cheap, easy to use, you
can get the prescription
at the pharmacy, and it
Dr. Terry Gernsheimer at the
has a high rate of
ITP Conference holds a photo
effectiveness. If you take
of the new ‘Terry’ orchid
a high dose of prednisone
for a short amount of time, or a low
dose for a longer period of time, the long
Q: My daughter has terrible migraines
term side effects are minimal.
from her treatment but the doctors
Dexamethasone seems to be better in
refuse to give her medication to treat
adults than in kids. IVIg is the best way
to get your count up overnight. WinRho
the headaches because of her ITP.
at 75 mg/kg works just as well as IVIg in
Is there anything she can take?
A: If her platelets are over 30, she
a high percentage of people and fairly
should be able to use any treatment
quickly. TPO agents as a first line of
that someone without ITP could use.
defense possess less side effects and a
Talk to your neurologist to treat the
higher response rate, however they are
consistent migraines.
considered second line therapies
because they are more expensive and
Q: What do you suggest for fatigue?
trickier to use.
A: Fatigue can be caused by
Q: What’s your experience with Anti-D?
inflammation or thyroid problems. Low
A: Anti-D (WinRho) at a higher dose
iron can also contribute; half of women
works almost as well as IVIg. In order to
of reproductive age have low iron even
receive Anti-D you have to be Rh+, not
if they’re not anemic. If fatigue isn’t
anemic, tested for antibodies on your
caused by one of those two issues or an
red cells, and will be administered a
obvious disease you can treat and
higher dose of steroids during treatment
control, try to bring up the platelet
because of the risk of reacting poorly to
count. If you’re less than 30 and you
the treatment. Bottom line is that it’s a
can bring your count to 50 it can help
good treatment.
with fatigue.
CONTINUED FROM PAGE 24
is no ITP voluntary association in Israel.
Michal and I, patients of Professor David
Varon, who is a very famous hematologist
in Israel and worldwide, were asked to
establish one. I am wondering what kind
of collaborations can we make with you
guys, and how can we be helped by you
and your experience. My partner and I
thought of some ideas and would be
glad to hear your thoughts and share
ours. On a personal note it is important
for me to say your Facebook’s group
helped me a lot along the way. I think
you are doing an important job and we
would like to do the same in Israel.
Thanks in advance. – Leron L., Israel
PDSA welcomes your letters and thanks
you for taking the time to write. We love to
hear from you. Please send your letters to:
Global View: Letters from Our
International Friends, PDSA, 8751
Brecksville Road, Suite 150, Cleveland, OH
44141, USA, or via e-mail to [email protected].
Letters may be edited for length and clarity.
26
The Platelet News
www.pdsa.org
Fall is Pledge Card Time —
Please Consider Donating to PDSA
By Carol Hoxie
For Federal workers, state employees, or
employees of companies that allow
payroll deductions for charities, fall is the
time of year when many of you pledge
to contribute through the United Way
or Combined Federal Campaign (CFC).
If you donate through these agencies,
please consider designating the Platelet
Disorder Support Association (PDSA) as
a recipient of your contribution.
PDSA gets no federal funding and relies
on donations to sustain and grow our
organization. Your contributions help
us support ITP patients and their loved
ones in a variety of ways. Contributions
help us maintain our Web site, answer
your questions, host an annual ITP
conference, provide e-news updates,
print our quarterly newsletter, promote
research, and more. Please consider
asking co-workers, family and friends to
designate their pledge to PDSA.
United Way
The United Way organizations are
separate, each having their own
application, tracking and numbering
systems. Nearby is a list of United Way
groups that have worked with PDSA in the
past. If your local United Way is listed, be
sure to include our number. If your local
United Way is not on the list and accepts
donations to outside agencies just place
our name and address in the area of
your United Way pledge card where you
designate funds. Your United Way will
contact us to send them authorization
and confirmation materials; then they
will place us on their agency list.
Combined Federal Campaign (CFC)
PDSA is listed under the National/
International Organizations. Our CFC
number is 10207. Please include our name
so there is no confusion about your intent.
Contact Us
After you complete your pledge, the
United Way or CFC will send us a
report with your name if you give them
permission to release this information.
Having your name makes it possible for
us to track your pledge and send you an
acknowledgement when we receive the
pledge and also when we receive the
funds. It would be helpful if you send
an e-mail to us with your United Way
or CFC designation and pledge amount.
This will help our budgeting process and
allow us to follow-up with the United
Way and CFC if there are problems.
Please note – when you give through a
United Way, they retain a portion of
your gift (usually between 5-15%
depending on the particular United
Way). PDSA fully supports the United
Way, as that percentage that we do not
receive is put to good use in your
community. However, if you want
100% of your gift to go to PDSA, you
always have the option to support us
directly. Visit our Web site at:
http://www.pdsa.org/contribute/make-adonation/united-waycfc-giving.html
Also, if you give through a United Way
or CFC campaign, PDSA may not
receive your gift or pledge for many
months. When we do receive your gift,
your name and contact information
may not be listed. So if you do
participate in a United Way or CFC
campaign, please contact PDSA so that
we can make sure your gift is recorded
and your philanthropy is recognized.
Thank you for helping us to help you.
United Way Listing
(State, PDSA number for that United Way
if available, United Way name, location)
8940 UNITED WAY FEDERAL National
Capital Area • AZ, 2279525, Valley of the
Sun United Way • AZ, 48511, Arizona CFC
(Tucson, AZ) • CA, 611848, United Way
California Capital Region (Sacramento, CA)
• CA, United Way California • CA United
Way Orange County • CA, 3848702, United
Way of Bay Area • CA, 954669, United Way
Silicon Valley (San Jose, CA) • DC/MD/VA,
8940, United Way of the National Capital
Area • DC/MD/VA, 28158, CFC of the
National Capital Area (Wash., DC) • FL,
48478, United Way of Brevard (Cocoa, FL)
• FL, 0304502, United Way of Miami-Dade
• GA, 48602, United Way of Metropolitan
Atlanta • IA, 2695, United Way of Story
County (Ames, IA) • ID, 10294PS, United
Way of Treasure Valley (Boise, ID) • IL,
48556, United Way of Effingham County
(Effingham, IL) • IN, 48669, Southeastern
Michigan CFC (Indianapolis, IN) • KY, 45683,
Fort Campbell Area CFC (Fort Campbell,
KY) • LA, 48519, CFC of the Greater New
Orleans Area (New Orleans, LA) • LA, 49019,
United Way of Southeast Louisiana (New
Orleans, LA) • MA, 0427, CFC of Eastern
Massachusetts • MD, 48534, Chesapeake
Bay Area CFC (Baltimore, MD) • MD, 48517,
CFC of Western Maryland • MD, 48476,
St. Mary’s County CFC (Pikesville, MD) •
MI, NS992, Greater Kalamazoo United Way
• MN, 7188460, United Way of the Greater
Twin Cities (Minneapolis, MN) • MN, 45088,
Greater Twin Cities United Way (Minneapolis,
MN) • NC, 48637, CFCSENC Fund (Fort
Bragg, NC) • NC, 48659, Cherry Point CFC
(New Bern, NC) • NJ, 45757, AT&T United
Way Employee Giving (Princeton, NJ) •
NJ, 48532, Northern New Jersey CFC
(Newark, NJ) • NJ, 45310, Pfizer United
Way Campaign (Princeton, NJ) • NV, 48536,
CFC of Nevada (Las Vegas, NV) • NV,
49564, United Way of Southern Nevada
(Las Vegas, NV) • NY, 0626, New York City
CFC • NY, 45315, CFC of Central New
York (Syracuse, NY) • NY, 27649, Niagara
Frontier CFC (Buffalo, NY) • NY, 48504,
(CONTINUED ON THE NEXT PAGE)
Platelet Disorder Support Association
United Way Listing
CONTINUED FROM PAGE 26
Taconic Valley CFC (White Plains, NY)
• NY, 42739, Truist (New York, NY)
(PDSA’s # is 062581) • NY, 3078193,
United Way of Buffalo & Erie County
• NY, 49667, United Way CNY (Syracuse,
NY) • NY, 27992, United Way of Buffalo
& Erie County (Buffalo, NY) • NY, 48735,
United Way of Greater Oswego County
(Fulton, NY) • NY, 25539, United Way of
New York City (New York, NY) • NY, 3090,
United Way of Schenectady County, Inc.
(Latham, NY) • OH, 223925, United Way
of Greater Lorain County (Lorain, OH)
• OH, 44590, United Way of Portage
County (Ravenna, OH) • PA, 45567,
Chambersburg Area CFC (Chambersburg,
PA) • PA, 1331274, United Way of
Allegheny County (Pittsburgh, PA) • PA,
47821, United Way of the Capital Region
(Enola, PA) • PA, 92093, United Way of
Centre County (State College, PA) • RI,
4430, United Way of Rhode Island • RI,
48931, United Way of Rhode Island
(Providence, RI) • TN, 48510, Smoky
Mountain CFC (Knoxville, TN) • TX,
48658, Dallas-Ft. Worth Metroplex (San
Antonio, TX) • TX, 48964, Sun Country
CFC (El Paso, TX) • TX, 1346469, United
Way Capital Area • TX, United Way
Capital Care, Austin • TX, 45572, United
Way of Metropolitan Dallas (Dallas, TX)
• UT, 48503, Intermountain CFC (Serves
UT, CO, ID, WY) • UT, 45611, United Way
of Northern Utah (Ogden, UT) • VA,
49660, America’s Charities (Chantilly, VA)
• VA, 48625, CFC Overseas (Alexandria,
VA) • WA, Greater Olympic Peninsula CFC
(Bremerton, WA) • WI, 44840, CFC of
Greater Wisconsin (Milwaukee, WI) • WI,
854C, United Way of Brown County
(Green Bay, WI) • WI, 000254, United Way
of North Rock County (Janesville, WI)
• WI, 60401, United Way of Greater
Milwaukee • WI, 128405, United Way of
Kenosha County (Kenosha, WI) • VA,
528877, United Way of Virginia Peninsula
• 062581, United.eWay • 1596461, Bank
of America United Way Campaign
phone 1-87-PLATELET
27
What Our Friends Are Saying
HERE IS A SAMPLING OF NOTES RECEIVED RECENTLY
Again from the bottom of our hearts,
thank you and PDSA for being a great
resource of Education & Outreach
during what was a very scary time in
our lives. – Gloria C.
Dear all. I would like to share my good
news. After a total knee replacement I
became ill about four weeks later and
was diagnosed with ITP. My platelets
dropped to 5,000 and I was given
platelets. Unfortunately it was
unsuccessful so I was put on steroids
and given gamma globulin. Again it
was short-lived and my steroids were
increased. My platelets dropped to
under 10,000 after a few months, so I
went for a second opinion and it was
confirmed I had ITP. I was then told
because my platelets had a history of
dropping so low and it was over a year
since I was diagnosed that I was at high
risk for internal bleeding and should
consider other treatments like
splenectomy or a drug called Rituxan®.
After much consideration I decided on
Rituxan and steroids as I was still trying
to recover from my total knee
replacement. It is now nine months
since my last treatment and my
platelets continue to improve.
Until I found your Web site I was afraid
and confused as very little information
was out there on the subject. I found
the information you sent informative
and comforting. It gave me a better
understanding of what I was going
through. Please keep up the good work
and thank you. Sincerely – Isobel J.
PDSA, I am writing to thank you for
offering me one of the three $100 book
awards. Receiving one of the Audi
Gerstein Scholarship awards was a
wonderful surprise and a great honor.
Thank you again, and have a lovely
summer. – Hannah R.
Wow, thank you ever so much for your
time and consideration on this matter.
You have been more helpful than any
other doctors that are dealing with us.
Thank you from the bottom of my
heart. I really appreciate your support.
Best Wishes – Bernie M.
Dear Ms. Kruse, Enclosed please find
checks made out to your organization
totaling $125.00. These donations are
from my in-laws and are in honor of my
late mother, Pam Yukihiro who passed
away on May 21, 2016. In 1988 Pam was
47 years of age when she was finally
correctly diagnosed with ITP. During
the course of her nearly 30-year battle
with ITP, she was a driving force in her
treatment and research of the disease.
Often found scouring the Internet and
reading long and complex case studies
she wanted to know anything and
everything that could possibly help her
successfully treat and possibly cure her
condition. I would very much like for you
and your staff to know that they and
their efforts mattered. She turned to PDSA
as a resource and a comfort. My hope for
the future is that a cure can be found but
until that time I take a great solace in
knowing the efforts of PDSA provide care,
support, and vital information to people
like my mom. Sincerest Thanks – Tracey G.
PDSA welcomes your letters and thanks you for taking the time to write. We love to hear from you.
Send your letters to: What Our Friends Are Saying, PDSA, 8751 Brecksville Road, Suite 150,
Cleveland, OH 44141, or via email to [email protected]. Letters may be edited for length and clarity.
NONPROFIT ORG
U.S. POSTAGE
PAID
CLEVELAND, OH
PERMIT NO. 2280
8751 BRECKSVILLE ROAD, SUITE 150
CLEVELAND, OH 44141
Postmaster: Send address changes to
PDSA
8751 Brecksville Road, Suite 150
Cleveland, OH 44141
Our Mission
THE PLATELET DISORDER
SUPPORT ASSOCIATION
IS DEDICATED TO
ENHANCING THE LIVES
OF PEOPLE WITH
IMMUNE
THROMBOCYTOPENIA
(ITP) AND OTHER
PLATELET DISORDERS
THROUGH EDUCATION,
ADVOCACY, RESEARCH,
AND SUPPORT
Don’t Miss a Single Issue!
You receive The Platelet News as an exclusive benefit of your annual PDSA membership.
When it is time for you to renew your membership, we encourage you to make your
gift online. This saves PDSA time and money, puts your gift to work immediately, and
helps ensure that you don’t miss a single issue of The Platelet News.
To renew your gift online, simply go to http://www.pdsa.org/renew
To receive an e-mail reminder when your membership is about to expire, make
sure that you have opted-in to receiving e-mail from PDSA. If you are not currently
receiving e-mail from PDSA, please send an e-mail to [email protected] to learn more.
THANK YOU TO
FOR SUPPORTING
PUBLICATION OF OUR
NEWSLETTER.
If renewing your gift online is not convenient, you can call us at (877) 528-3538 to
make your gift over the phone, or to request that a gift/pledge card and reply envelope
are mailed to you.
No matter how you renew your membership gift, we are truly grateful for your support
and for all that your philanthropy enables us to do for the ITP community.