Download ABDA Winter, 2008 Newsletter - American Behcet`s Disease

SPREADING THE MESSAGE OF HOPE
VOLUME 28, ISSUE 3
Summer, 2008
A Letter from the President…
ABDA
BOARD OF DIRECTORS
Cathy Fornabaio
PRESIDENT &
DIRECTOR OF FUNDRAISING
[email protected]
Sandy McElgunn
VICE PRESIDENT &
HOTLINE DIRECTOR
[email protected]
Denise Corrado
EXECUTIVE SECRETARY &
CORRESPONDENCE COORD.
[email protected]
Sheryl Burke
MEDICAL LIAISON
[email protected]
STAFF:
EXECUTIVE DIRECTOR
Jessica Nuzzo
[email protected]
631-656-0537
www.behcets.com
1-800-7BEHCETS
PO Box 869
Smithtown, NY 11787-0869
Greetings to our friends!
Wow, what an inspiration
it has been to watch
Sanya Richards run in the
Olympics. I followed most of the Summer
2008 Olympics, but of course, I’ve been
watching Sanya Richards closely. She is so
fast. It is true what they say about her, “Faster
than a speeding bullet”. When you get a
chance, check out her website
at www.sanyarichards.com. It
is full of great stories and even
has an area to “blog” about
Behçet’s Disease.
unless people see the pain, the swelling, or
other outward signs of Behçet’s Disease, they
will not consider the fact that we are suffering so much. So now that Sanya Richards is
all over the news, many relatives and friends
of Behçet’s sufferers are telling us, “well, if
Sanya can run the 400M how bad can it be?”
I have even received calls from people telling
me to ‘call Sanya’s doctor because he must
have a cure!’ When I tell them I have been
seeing “her” doctor for the past
five years they seem completely baffled!
A similar issue came up after
Discovery Channel did a show
An individual Bronze and a
on a Behçet’s sufferer. While it
Team Gold for the USA is an
was wonderful that we could
Annual
Board
incredible accomplishment for
get some awareness out there,
Meeting
any athlete, but for one that
especially in the United States,
to be held
suffers from Behçet’s disease
many people that watched the
seems even more amazing. I’ve
October 16, 2008 show came away thinking that
received many letters, e-mails,
this one case was reflective of
in
etc. from Behçet's sufferers
all Behçet’s sufferers. What did
Uniondale,
NY
about Sanya. It seems that
not come across enough was
many have mixed emotions
that symptoms can vary wildly
about the exciting news of Sanya becoming
from one sufferer to another and that remisan honorary Board member and a spokespersion is not the same in all.
son for the ABDA. While at first I did not
understand how one could feel this way, I
As I’m sure many of you do, when I speak to
began to realize what the issue was after
non-sufferers, I can’t seem to stress enough
speaking with several people.
that Behçet’s Disease can manifest differently in every single person. Patients have mild,
It actually has nothing to do with Sanya
moderate, or aggressive cases. Some have
Richards herself. It has to do with the lack of
complex symptoms and Neurobehçets, while
understanding about Behçet’s Disease.
others may only have two symptoms. It is
Unfortunately, as with any auto immune disDIFFERENT for everyone, and there is no
ease, Behçet’s sufferers are faced with the
single treatment that works for all. It is for
everyday battle of the famous “but you look
these reasons that we are taking the next step
good” phrase from everyone. (I know this
in our mission to EDUCATE.
one personally very well.) It seems that
continued on pg. 2
WHAT’S INSIDE
SANYA RICHARDS
is coming to the
WALK for BEHÇET’S
are you?
• The 13th International Conference on Behçet’s Disease
• Dispose of Those Drugs - PROPERLY!
• How to Communicate with a Chronically Ill Person
• Behçet’s Disease Hits Public Television!
A Letter from the President continued...
Dear ABDA...
We are pleased to announce, that in
October of 2008, in conjunction with
Vision Media, the ABDA will be filming an educational program about
Behçet’s Disease. In hopes to stress the
fact that this condition can be so different for each person, we have decided to
include a few stories/interviews with
very different cases of Behçet’s.
Viewers will see not only different ages
and genders but varying degrees of
severity. I hope that after this project is
completed, many will start to understand Behçet’s Disease and how it can
be so difficult to live with.
It’s always wonderful to hear from our members…
Please feel free to write to us in letters or e-mail!
The project goal is to raise awareness
and educate the public along with the
medical field, so that the diagnoses level
goes up in the United States and we can
get hold of grants for research. You can
read more about this important undertaking on page 15.
The 2008 Walk for Behçet’s is just
around the corner and we are so excited!
Have you registered yet? We have so
many new faces to meet, and several from
out of state! It’s a great time to come
together and share our stories and experiences, and once again confirm that we are
NOT alone! It’s a magical feeling that I
hope all of you will come and experience
for yourself. If you are not able to join us,
please consider donating or even registering (the same way a walker does) to collect donations for the event. We will be
happy to send your T-shirt and program
along to you after the event!
We will also be holding our Annual
Board Meeting during this weekend. It
is a time of reflecting on our accomplishments and planning our future
goals. We will be voting on our Board
members and officers and will bring
you all of the news, along with the
Association’s 2009 goals and objectives
in the next newsletter.
I wish you all a beautiful Fall season,
full of cheery colors and fresh, cool air,
and I hope to see you ALL in New York
on October 18th!
Dear ABDA,
Dear ABDA,
I’d like to do more to help the ABDA. I’m
not very good at fundraising, but I’m good
on the computer. Who can I talk to about
volunteering?
Thank you! We’d love to have you! There
are many things that we need help with
here at the ABDA. There are many programs that we are interested in setting up
in the future, but they all take good ol’
fashion man-power and we can not afford
to hire staff yet.
We do post “ads” in our newsletter from
time to time (as you can see on page 15
today), but if you have a special skill-set
or a special interest, and a genuine interest in helping those with Behçet's
Disease, please feel free to contact our
Executive Director, Jessica Nuzzo at
[email protected]. She’ll be happy to
put you to work on something that suits
your passions!
We are sorry if you have had trouble with our
website. It was built with many powerful
tools so that it could be a 24/7 resource for
all of you! We hate to think that we can’t be
there for you when you need us.
If you ever have trouble with your password,
and you are SURE you have the correct one,
try these three things:
1) Type everything very slowly and with one
finger. Yes, sometimes even the best typists
can slip when we are moving too quickly!
2) Make sure your Caps Lock is not turned
on. Remember that usernames and passwords can be “case-sensitive”.
3) Sometimes the server we use may be going
through an update or system-wide refresh.
(Especially if it is in the middle of the night).
You may want to try again in a few hours.
If none of these things work, you can always contact the webmaster at [email protected].
SUPPORT GROUP LISTINGS:
Do you run a Behçet’s Support Group?
The ABDA is setting up a listing area on our website where we can list your Support
Group with its dates, times and locations. If you would like your Support Group listed,
please use the form at: www.behcets.com/listingrequest.
ABDA MEMBERS GET 15% OFF!
Just in time! Need to send someone you
love a Holiday basket, gift or flowers? Or
maybe decorate your own Holiday table?
Now ABDA members get 15% off
at 1-800-Flowers.
Just log on to
www.1800flowers.com and use the code
“ABDA” to get your discount.
Remember to use igive.com or goodshop.com to access 1-800-Flowers and the
ABDA will receive a donation!
Are You Moving?
Respectfully,
Cathy Fornabaio
ABDA President
Sometimes I go to log in on the ABDA website and it does not let me in! I’m sure I’ve
got the correct username and password. It is
very frustrating. Can you please tell me why
this happens?
If you are moving or have moved,
please contact us ASAP to update
your address. You can call us at
1-631-656-0537, or log on to our
-2-
website and use the Contact Form.
Premier members can edit their profile themselves by visiting their “My
Homepage”. Thank you!
Small Changes that could bring Big Results...Tips for a “Better You”
These ideas and many more were
found at Tesh.com:
Try Stress Inoculation
Training to Help You Deal
With Stress
What can make Behçet's Disease
even worse? Stress! Unfortunately, no one has
invented an anti-stress vaccine, but I want to tell
you about the next best thing. It’s called Stress
Inoculation Training, and it works! The idea is
simple. You can’t change people, but you can
change your reaction to them and actually build up
a resistance to getting upset in the future. Here’s
how, courtesy of MSN:
Write down your thoughts. Let’s say your ex is
always late dropping off the kids. You might think
things like, “He does this just to get my goat,” or
“She’s so selfish!” However, instead of dwelling
on these ideas, write them down. Once they’re on
paper, then you’re ready for:
Look at the matter objectively. Think of yourself
as an investigative reporter. Is there any evidence
that he’s late on purpose? You might realize he’s
never on time for anything, but even if it is deliberate, getting upset only hurts you.
Rehearse a different response. This accomplishes
two things: It trains you to see minor annoyances for
what they are - minor, and it allows you to react
calmly. So, practice saying, “I really worry when
you’re not on time. It would help me if you’d call,”
instead of “You never think of anyone but yourself!”
Try These Tricks to Feel Happier,
and Less Stressed
Try these medicine-free stress-relieving tricks
from Woman’s World Magazine:
If you want to boost your overall HEALTH: Start
singing! It doesn’t matter if your Kelly Clarkson
impression makes dogs howl. A German study
found that singing raises immunity-boosting white
blood cells that protect the body from colds, flu,
and stomach aches. The deep breathing you do
while singing can also help lower the body’s blood
pressure and heart rate.
ries. The repetitive nature of knitting can help you
calm down because doing something over and
over again relaxes your brain.
More Tricks to Ease Your Stress
If stress is sending you into a tailspin, try these
tricks from Quick and Simple Magazine.
Form a fist. The next time you’re stressed, try this
trick: Clench your fists tightly for five seconds, then
open them. Why does this work? Because when a
muscle tenses as much as possible, it becomes able
to detense completely. Basically, clenching and
releasing your fists is kind of like pushing an internal
“reset” button on your body, which helps you relax.
If you want to feel HAPPIER: Try dancing. Why
would this help? Because studies show that dancing releases anger and stress by triggering the production of mood-lifting endorphins. If dancing
isn’t your thing, try working in the garden to feel
happier. Researchers at the University of Bristol in
England discovered that breathing in certain
“friendly” bacteria found in soil activates the
mood-elevating brain chemical serotonin.
Look at something blue, like the blue screensaver
on your computer, or a blue pillow in your living
room. Rutgers University researchers found that
blue triggers the production of a calming brain
chemical. According to Dr. Bernie Siegel, author
of 101 Exercises For The Soul, since blue is the
color of the ocean and the sky, we automatically
associate it with the serene feelings that come with
being out in nature.
The final pill-free cure is for STRESS. Grab some
knitting needles. Harvard Medical School
researchers found that knitting, crocheting,
sewing, or needlepoint are as effective as meditation at triggering relaxation. Why? Because the
activity requires all of your concentration. You
don’t want to poke your finger with a needle,
which prevents you from thinking about your wor-
Help someone. Being kind to others produces a
rush of feel-good chemicals in the brain. That’s
according to the book Stress Free For Good. That
endorphin surge boosts your mood. So help a little old lady cross the street. Or offer to
watch your neighbor’s kid while
they run to the store.
Awareness & Fundraising...
Using your talents or hobbies to raise money and awareness!
Photography, I love it. I
think I enjoy taking pictures
because I love to “make
memories”. OK, so I don’t
actually make the memories. I suppose I just preserve them.
I’ve always loved taking pictures. I remember
annoying friends and family to “get together
for a shot” before we called it a day, etc. But
inevitably, when they had that perfect memory later, they would thank me!
Recently, my 7-yr old daughter was in a musical at the local Regional Performing Arts
Theatre. She and 50 other children under the
age of 18 put on an AMAZING show called
“Seussical Jr.”. The children rehearsed several
times a week for two months before the show
opened and wow - you could see how hard
they worked! I knew that the parents would
want to remember this important event, so,
with the theater-owners permission, I went to
several shows and shot the kids during their me at my e-mail below. I also wrote this:
mike checks and even during the performanc“Many of you have offered to compensate me
es from the balcony.
for the time and materials involved in creating
The end product? Each child went home with these memories. While I will not accept coma sheet of “head shots” that I took of them in pensation for these images, please consider
costume, individually, on the beautifully col- making a donation to the American Behçet’s
ored stage, as well as a “cast photo” of the Disease Association to support the fight
group they were in. I also had about 600 (edit- against Behçet's Disease. This disease can
ed down from 1200!) pictures that I took at the affect children like ours and I am walking in
October to try to help find a cure.”
live performances.
Now what? I couldn’t print all of those pictures for everyone, and I didn’t feel comfortable charging money for them (although so
many parents kept asking me if they could buy
a CD of the images from me).
When the parents e-mailed me for the images,
I e-mailed back the link to my walk page for
them to donate on.
So, the moral of this story is. I shared my passion and hobby with others while raising
I sent a note to all of the parents when I distrib- money for a great cause. What are your pasuted the headshots I printed at Costco (my local sions? Put them to work for a good cause
discount warehouse - $.37 each!) and on it I today and see how great it feels!
explained that I had these 600 pictures and if
they would like a copy of the CD, please contact By Jessica Nuzzo
-3-
“I Need Help, Not Suggestions!”
How to Communicate with a Chronically Ill Person
An Informative Book For Patients, Caregivers, and Physicians
by Ashley Montclair, Ph.D.
tions showered endlessly upon PCIs.
Excerpt from Introduction
Several varieties of the above are
described, along with true stories.
Persons with Chronic Illnesses (PCIs)
In American society, Persons with Chronic
Illnesses (PCIs) are frequently neglected,
even abandoned, by families and friends.
We are told that we are not keeping busy.
We are told to shape up. We are told many
things by people in the healthy community.
For centuries, PCIs have been defined negatively. But in this book, the healthy,
dubbed “Non-Chrons,” take their turn.
They include relatives, caregivers, friends,
pastors, strangers—in short, anyone who
has not experienced chronic illness or who
mistreats PCIs.
Non-Chrons sometimes have absolutely no
idea how to relate to a PCI. They are apt to
make totally ignorant pronouncements,
implying that we are either stupid or simply
imagining our severe medical conditions.
It is a plea that Non-Chrons take the time to
listen, quietly and non-judgmentally, to PCIs.
It is a guidebook for Non-Chrons
PCIs can show an excerpt to a Non-Chron
and say, “See? This is what I mean.” It
affords PCIs an opportunity to help NonChrons interact more productively and
learn to empathize.
Best wishes to all of you who read the book.
It is categorically not pseudo-inspirational
or “flowery,” but rather, a discourse on
behavior.
It is not an essay on my personal medical
problems with CFS.
Deliberately kept short, it is printed in 14
point type for ease of reading. The subject
matter expresses and elucidates common
feelings and problems of PCIs who are so
ill and disabled that they cannot work. Note
that the term “invalid” is not used, for its
second meaning, “in-valid,” renders us
non-persons.
Some of my ailments may be mentioned,
but only as foundational examples for the
often loutish behaviors of the healthy.
The main focus is on the unhelpful “Have
You Tried” and “Why Don’t You” sugges-
I do not presume to speak for all PCIs.
What This Book is Not
First, the content identifies with the emotions and experiences of many PCIs.
The book is a complaint on behalf of yours
truly and other PCIs. It points out negative
behaviors of Non-Chrons.
While requesting better behavior from
Non-Chrons, most PCIs, even those who
are extremely ill, recognize that human
relationships require giving as well as
receiving. PCIs can give back in creative
ways. (The final chapter details how.)
Every PCI has different experiences and
reactions. Some may not be those
described here. However, the main idea is
to improve the attitudes of Non-Chrons.
The book is not a medical monograph. (I
have a Ph.D. degree, not an M.D. degree.)
I am a PCI who suffers from a painful and
disabling condition I’ve had for over 10
years—Chronic Fatigue Syndrome (CFS).
I have struggled personally with all the
problems presented here.
This is not merely a plea for “gimme.”
In addition, some content may apply to
persons with terminal illnesses or mental
illnesses. Even overstressed caregivers
may benefit.
Purpose of The Book
Some PCIs have the strength to pursue
gainful employment. They are indeed fortunate, but their difficulties are not the
same as those we very ill PCIs have. As
members of a culture that insists on overwork and stress, ignoring and stigmatizing
severe illness, PCIs tend to be marginalized, misused, and treated as idlers.
with their talents, their time, and their
resources. Instead, it’s directed at those
who act appallingly and who do not contribute to the well-being of PCIs.
It is not a doctor-bashing work.
Increasingly, physicians are becoming better informed about chronic illnesses. With
the imminent retirement of the Baby Boom
generation, chronic conditions will have to
receive more emphasis.
Fortunately, I have an outstanding physician who understands both my illness and
my personality. Unfortunately, not all PCIs
have doctors who try to get to know them
and provide meaningful support. However,
there are many excellent doctors who give
first-rate care.
The intent is not to lash out at all
healthy folks.
VERY IMPORTANT! Many healthy persons do not exhibit the behaviors of the
Non-Chrons in these pages. They are fine
human beings.
They show concern, give of themselves
unstintingly, keep in touch with the isolated chronically ill patient, and are generous
-4-
Excerpt from Chapter 1:
Chronicles of “Have You Tried” Part I:
Ignorant Medical Advice
“Case Studies” of Persons Offering Hokey
(and Dangerous) Remedies
Some of the most exasperating problems
any PCI may have with Non-Chrons are
what I’ve dubbed “Have You Tried.” Three
examples:
“Have you tried this herb?”
“Have you tried this naturopath?”
“Have you tried exercise?”
Such questions and unoriginal thoughts are
more than irritating. They are simplistic,
offensive, and not helpful in the least. They
go hand in hand with “Why Don’t You”—
e.g., “Why don’t you get a job?” or “Why
don’t you try this new clinic?”
Most gallingly, the issues Non-Chrons so
facilely raise are alternatives any sick person would already have either explored or
considered investigating. Upon hearing
such questions, the PCI wants to shout at
the offender: “You moron! Don’t you realize I’ve already thought of that?!”
Because they are such an important element
of this discussion, “Have You Tried” and
“Why Don’t You” have been separated into
two categories, each in its own chapter:
1. Dim-witted medical advice
2. Ludicrous employment advice.
These sections recount egregious examples
(by no means all!) of my encounters with
the well-meaning but ill-informed.
During the first four years of ailing with
CFS, I was very patient. But by the end of
the four-year mark, my tolerance for this
repetitive, ceaseless blather from NonChrons had ended.
Bear in mind that I feel lousy all the time.
Is that a legitimate excuse? Yes. Am I an
advice-giver myself? Yes, about Social
Security (SS!) Disability and fraudulent
disability insurance companies, which I’ll
mention peripherally.
The discourse here is intended to be educational. Names have been changed to protect
the contemptible.
Non-Chron: “Aren’t you rejecting people’s
advice out of hand, when it might help?”
Dr. Montclair: A couple of years ago, there
was a program on TV about people with terminal illnesses. (Note: I hope to be around
for a long time, arguing with Social Security
and helping PCIs.) On the program, a man
with terminal cancer intelligently and pointedly remarked, “I will not get involved in
the rescue fantasies of other people.”
While it may appear laudable for lay persons
to attempt to help, it can be hazardous--even
fatal--to follow their non-professional advice.
“Why don’t you go on this diet?” or “Have
you tried this new therapy?” can actually hurt
patients or aggravate their illnesses. Here are
some dangers that can result from the use of
so-called “natural” health products:
Interaction of herbal substances with medication--e.g., for high blood pressure.
Contraindication for the patient’s specific
condition or for other health problems the
patient may have.
Conflict of the substance with certain
foods—e.g., grapefruit or lettuce.
Lack of FDA regulation. The quality and
amount of the substance cannot be accurately determined.
it is so intellectually demeaning. A woman
I know with Stage 4 cancer was asked this
question—in fact, was bullied with it, right
as her illness was worsening.
When a person is diagnosed with a chronic
illness, obviously, one of the very first
things he or she usually considers is
whether to consult another physician, clinic, or diagnostic facility. “I’ve already
thought of that!” or “I’ve already done so!”
are answers one wishes to yell at Mr. S. O.
Anna, the Surgery Promoter. She is a welleducated woman I’ve known since graduate
school in the 1970’s. We still correspond
annually, even though I haven’t seen her for
many years.
Several years ago, when she found out via a
Christmas card that I have CFS, she actually called on the phone. She tried to persuade me to have an operation on what is
known as the Chiari formation, a structure
at the base of the skull. This surgery was
somewhat of a fad at the time. Some
patients had an alleged Chiari malformation
operated on and supposedly experienced
improvement of CFS, fibromyalgia, and
other conditions.
However, the procedure is not covered by
insurance. It is experimental, expensive,
and extremely dangerous. In some cases,
permanent paralysis has resulted.
Undaunted, Anna said, over and over, “You
should at least have an MRI.” Insurance
will not fund an MRI for this or for CFS,
nor will I gamble my life on such outré
invasive surgery.
Lisa the Celebrity. Several years ago, an
article appeared in the paper about a star
named “Lisa” (here, under a pseudonym).
She claims to have had CFS and was
allegedly cured via natural potions.
Numerous persons sent me the clipping.
Lisa professed to be completely healed of
her CFS within three years. How? By
means of a “holistic” or “natural” course of
therapy.
The Medical Advice-Givers
Maybe the treatment worked. Maybe she
got over the CFS on her own. But as a
celebrity, Lisa has status. And being a
Hollywood type, she would never subscribe
to allopathic methods—i.e., traditional
medicine. To be acceptable to a movie or
pop star, a cure is required to be an exotic
herbal regimen. It would be completely
politically incorrect for a modern celeb to
say that a traditional allopathic doctor cured
his or her illness.
Mr. Second Opinion. “Why don’t you get a
second opinion?” is a familiar question to
PCIs. Its odious nature lies in the fact that
Non-Chron: “Aren’t you discounting the
value of alternative treatments? They work
for some people.”
Potentially fatal effects on organs and
blood—e.g., blood thinning, which can
cause death, especially during surgery.
And now: Presenting the first group of
harmful Non-Chrons:
-5-
Dr. Montclair: I am not saying that no one
is ever “cured” via unorthodox methods.
But trying to force them upon a patient is
stupid and sadistic. Sometimes people
whose outlandish recommendations I try
tactfully to reject ask angrily, “Don’t you
want to get well?” Duh! Of course I do.
When I politely decline their foul nostrums,
they say, “You’re giving up.” No, I’m not!
But that doesn’t mean I have to chase after
each faddist remedy, do what these semi-literate persons advise, or even appreciate it.
Will, the Patent Medicine Guru. He and his
wife, members of the church I attend, have
a daughter, Barbara, who has CFS. She’s in
her 40’s. She had onset because of sheer
overwork. She was toiling away at her job
60 hours a week and is a single parent,
divorced twice from abusive husbands. Her
parents have been raising her daughter, who
is now a teenager. Mind you, Barbara never
comes to church!
One Sunday, her father Will, a tall man with
a heavy-handed personality, came up to me
at church. Very suddenly, and without even
saying hello, he blurted out, quite harshly,
“You have to try __ [whatever the product
was]. It’s only $35, and it’s helped Barbara.”
Without another word, he stomped off. I
knew that if I waited two months or so, he
would no longer bring it up. As with all faddish concoctions, the appeal would fade. To
my knowledge, Barbara has still not been to
church, and Will has said no more about
this faux “cure.”
© 2007 by Ashley Montclair, Ph.D.
All Rights Reserved. No portion of this book may be
reproduced in any form—e.g., electronically, through
the Internet, or via written publications.
About the Author
Dr. Ashley Montclair is the pseudonym
for a real Person with Chronic Illness.
She has an earned Ph.D., as well as an
M.A. and B.A. (Phi Beta Kappa).
Before becoming ill, she taught in several fields at university level for many
years, including language.
Contact Information for
Purchasing the Book
Persons who would like a copy, please send
your request to the following address:
Dr. Ashley Montclair
439 Kendall Ridge Court
West Monroe, LA 71292
Enclose $5 donation (cash or money
order) for postage and printing.
Q
“Ask the Doctor” is not intended as a substitute for the advice provided by your own physician or other healthcare professional. You should always consult your physician to discuss specific symptoms and conditions. The
views expressed in this column are the author's. Readers are advised always to consult their doctor for specific
information on personal health matters. The naming of any product or therapy in this column does not represent
an endorsement by the American Behçet’s Disease Association.
Q
Is Behçet’s always genetically linked? I cannot find any trace of
middle-eastern descent in our family.
There is also no trace of other autoimmune disease anywhere."
A
Behçet’s has a genetic component, especially in endemic areas
like around the Mediterranean, especially eastern parts and the far east.
However this only explains some of
the cases and a lot of patients have no
family members or ancestry in these
areas. Genetically linked diseases or
genetic risks are overly discussed in
the media. When we talk about a true
genetic disease we mean as an example Down’s syndrome, where there is
a clear genetic problem leading to
symptoms. None of the chronic, especially rheumatic diseases are genetic
diseases in that sense. Genes only
explain some of the association and
make us think in a certain direction
but there are many other pieces of
information we need to consider.
Even in breast cancer, where the
strongest gene connections have been
described, these genes explain less
than 20% of the breast cancer cases.
Q
I've heard that many Behçet’s
Sufferers have the gene "HLA-B51".
Can you explain to me what this is?
I went for genetic testing and I do not
carry this gene. Does this mean that I
may NOT have Behçet’s after all?"
A
Depending on what population is studied, some patients with
Behçet’s have the HLA B51 marker.
However it can be seen in a certain percentage of the normal population also.
So not every person with a positive
HLA B51 has Behçet’s and certainly
not all patients with Behçet’s have a
positive HLA B51. It is again one of
the things to consider in the whole picture of disease manifestations and
when we make the diagnosis.
Behçet’s is a clinical diagnosis, if you
have the symptoms, and other common causes of these have been ruled
out, you have Behçet’s, whether you
are positive or negative for HLA B51.
I keep hearing that Behçet’s is
supposed to "get better" as you get
older - but in speaking with others with
the disease, I have yet to find anyone
who has become anything but worse as
the years go on. Can you please clarify what is meant by this statement?
A
Large cohort studies that have
looked at and followed patients over1020 years have shown that most patients
with Behçet’s get better over time,
meaning they have less symptoms, or
their symptoms get less severe. Up to
80% have so few symptoms left that it
is sometimes difficult to even diagnose
Behçet’s. In addition most do not
require daily medications to control
their symptoms. Having said this, if
there is certain types of involvement,
CNS or vascular especially, and sometimes eye involvement, which are all
more severe manifestations of Behçet’s,
the improvement rates can decrease.
There is an inherent bias when patients
contact patients online or thorough
patients’ support groups, as patients
who are doing well are rarely in these
forums. Because of this, there is a
selection towards patients not doing
well, which is understandable. Up to
20-30% of patients, even in late disease, but especially so in early phases,
may not be doing well at the same
time. This bias towards sicker patients
searching for treatment options and
voicing their concerns, is the case with
any disease that has online or off line
support groups.
WANT TO ASK A QUESTION?
Readers who wish to ask Dr. Yazici a question
may do so by visiting the Behçet’s Syndrome
Center area of our website at: www.behcets.com,
and clicking “Ask the Doctor”.
Yusuf Yazici, MD
Behçet’s Syndrome Center
NYU-Hospital for Joint Diseases
246 East 20th Street,
Suite102, NY, NY 10003
Because Dr. Yazici receives so many questions, it
is impossible for him to personally respond to
every one. If your question is selected, look for
Dr. Yazici’s response in an upcoming “Ask the
Doctor” article in the newsletter.
646-356-9400
-6-
The 13th International Conference on Behçet’s Disease
Pörtschach, Austria, 24–27 May 2008
The 13th International Conference on
Behçet’s Disease was attended by more than
160 delegates, and 138 abstracts were presented orally or as posters.
Neuro-Behçet’s
Professor Adnan Al-Araji from Stoke in the
UK gave an overview of central nervous system involvement in Behçet’s disease. The
reported incidence of neuro-Behçet’s varies
around the world, but overall it seems that
around 10% of BD patients will develop it.
Neuro-Behçet’s can be classified into
parenchymal and non-parenchymal types.
The former involves the brain stem and central areas of the brain and spinal cord and
represents about three-quarters of cases,
while the latter mainly manifests as intracranial hypertension. Only about 10% of cases
of headache in BD patients are attributable
to neuro-Behçet’s; most are due to migraine
and tension headache associated with disease flares. The disease course can be
relapsing–remitting, primary progressive or
secondary progressive. Acute parenchymal
disease is treated with high-dose steroids
and disease-modifying drugs such as azathioprine, methotrexate or anti-TNF agents.
Cerebral venous thrombosis is treated with
anti-inflammatory drugs and anti-coagulants. Cyclosporine should be avoided in
neuro-Behçet’s if possible. Biologic agents
are used in severe, resistant cases, but the
duration of treatment needed is unknown.
There is a need for evidence-based treatments, and a NeuroBehçet’s Study Group
has been established.
A group from Japan presented follow-up
data on the treatment of chronic progressive
neuro-Behçet’s disease with infliximab.[1]
They showed that 14 weeks of infliximab
treatment could prevent neurological progression in patients resistant to methotrexate
by reducing levels of interleukin-6 in the
cerebrospinal fluid. They then followed five
infliximab-treated patients for up to 2 years;
all of these patients were smokers. In the
three patients who were able to stop smoking IL-6 levels were low (<20 pg/ml), with
or without further infliximab treatment,
while levels remained high in the two who
continued to smoke irrespective of treatment. It appears that smoking is a cause of
resistance to treatment in chronic progressive neuro-Behçet’s.
Eye disease
Professor Shigeaki Ohno presented data on the
trends in ocular lesions associated with
Behçet’s disease in Japan.[2] The number of
new cases of BD has been decreasing in recent
years, and the visual prognosis of patients with
eye disease has improved since the introduction of infliximab. Whereas BD used to be the
most common cause of uveitis and intraocular
inflammation in Japan, it is now in third place
behind sarcoidosis and Vogt-Koyanagi-Harada
disease. Of 113 patients with ocular manifestations of BD treated with infliximab, 75%
showed marked improvement after 6 months;
average visual acuity increased and the average number of ocular attacks had fallen from
3.74 to 0.75. In addition, use of cyclosporine
and steroids was reduced and there were only
two serious adverse events.
Turkish researchers also looked retrospectively at patients treated with infliximab for eye
disease.[3] Ten patients used infliximab for a
median of 14 months and, although their
mean visual acuity remained stable, the number of ocular attacks per month decreased significantly. For relapse of sight-threatening
panuveitis, a Greek study found that a single
infusion of infliximab acted faster to reduce
inflammation than either intravitreous trimcinolone or high-dose intravenous methylprednisolone.[4] Interestingly, Iranian researchers
found that BD patients, especially males, with
ocular involvement had higher serum levels of
TNF-alpha than did patients without ocular
involvement, suggesting a role for TNF-alpha
in disease expression.[5]
A German group retrospectively analysed
data on 45 patients with ocular involvement in
Behçet’s disease treated with interferon-alpha
for a mean of 34 months and 32 patients treated with cyclosporine A for a mean of 48
months.[6] Fewer recurrences occurred in the
interferon-treated patients, and their final
visual acuity was better than that of the
cyclosporine-treated patients. Four patients
were able to discontinue cyclosporine treatment compared with 12 for interferon. An
Iranian pilot study of rituximab in 10 patients
with longstanding ocular disease resistant to
cytotoxic drugs and steroids showed a significant improvement in the Total Adjusted
Disease Activity Index, with significant
improvement in oedema of the retina, disc and
macula after 6 months.[7] Visual acuity and
retinal vasculitis also improved, but the results
were not statistically significant.
-7-
Given the high cost of drugs such as rituximab and infliximab and the need for aggressive treatment to prevent blindness in patients
with ocular lesions, researchers in Iran also
looked at combinations of cytotoxic drugs.[8]
They found that combination therapy of pulse
cyclophosphamide, azathioprine and prednisolone was effective in improving visual
acuity, posterior uveitis and retinal vasculitis
in the long term (up to 5 years).
Oral, genital and skin manifestations
A study carried out in four Greek hospitals
looked at the spectrum of mucocutaneous
manifestations of Behçet’s disease in 202
patients between 1991 and 2007.[9] Around
64% of patients initially presented with oral
aphthous ulcers. During follow-up, 65% of
male patients and 51% of females had genital
ulcers, while more females than males had
erythema nodosum (78% versus 43%).
Genital ulcers seemed to be more common in
these Greek patients than in Lebanese,
Turkish and Korean patients, but similar in
frequency to German patients. For the evaluation of oral ulcers in BD patients, a Turkish
group has developed a composite index that
takes into account patient-derived factors such
as pain and functional disability as well as the
number and duration of ulcers.[10]
There were several reports of different treatments for oral ulceration. A prospective study
in Egypt used twice-daily sublingual tablets
of interferon-alpha as a preventive therapy in
21 BD patients, 16 of whom had major aphthous ulcers.[11] After a median follow-up period of 13.5 months, the frequency of ulcers
decreased significantly from an episode every
28 days before interferon to once every 61
days after addition of interferon; the duration
of aphthosis fell significantly from 9.5 days
to 4.6 days. They reported that the cost of this
treatment is not very high. A Korean group
found that topical tacrolimus applied twice
daily for 2 months was effective in reducing
the frequency and number of oral ulcers, as
well as pain scores, in 15 patients with treatment-resistant recurrent ulcers.[12]
A promising alternative option was presented
by Portuguese researchers.[13] In a preliminary
study, they told 17 patients with active oral
ulcers to take a probiotic yogurt containing
Bifidobacterium lactis twice a day and assessed
their ulcers 3 weeks later. Both the number and
duration of attacks were decreased in 10
patients and increased in six, while the frequency of attacks was decreased in nine and
increased in eight. Lactobacilli seem to have
immunomodulatory effects and decrease secretion of pro-inflammatory cytokines; however,
larger studies and longer treatment periods are
needed to determine the true potential of this
therapy. Other promising topical therapies
reported by a group in Iraq were zinc sulphate
mouthwash and nigella sativa oil.[14][15]
Thrombotic complications
Professor Francisco España from Spain spoke
about the endothelium and thrombophilia in
Behçet’s disease. Endothelial dysfunction
associated with vasculitis can lead to thrombophilia. Thrombophilic factors that have
been shown to be associated with thrombotic
complications of BD include factor V Leiden
mutation and the prothrombin G20210A
mutation. Inflammation and coagulation are
closely related, with a vicious circle whereby
prothrombotic factors increase coagulation,
which leads to increased pro-inflammatory
factors and thus increased inflammation. The
protein C pathway is important in the
process, and activated protein C is reduced in
patients with thrombosis. Defective fibrinolysis is also associated with thrombosis in BD.
The fibrinolytic inhibitors thrombin activatable fibrinolysis inhibitor (TAFI) and plasminogen activator inhibitor-1 (PAI-1) are
increased in patients with BD, but only TAFI
is higher in patients with thrombotic complications than in those without. Screening for
these various factors could help to assess the
individual risk of thrombotic events in
patients with BD.
An Italian group reported results of research
on endothelial progenitor cells (EPCs).[16]
These cells seem to be involved in maintaining vascular integrity and are altered in conditions such as diabetes and atherosclerosis.
Circulating EPCs were found to be greatly
reduced in BD patients compared with controls, suggesting that impaired endothelial
repair contributes to vascular damage in BD.
A “controversial discussion” was held on the
subject of anticoagulation after thrombosis in
Behçet’s disease. It was noted that there are
no guidelines for screening for vascular
involvement in BD. The primary pathology
of venous thrombosis in BD is inflammation
of the vessel wall, so the main priority is to
ensure that immunosupression is adequate.
Additional anticoagulation may help to prevent progression and recurrence of thrombosis in some patients. The recurrence rate is
highest in male patients, especially those
with the factor V Leiden or prothrombin
G20210A mutation. However, the additional
benefit of anticoagulation is probably small
and is not supported by strong evidence.
Paediatric manifestations
Professor Isabelle Koné-Paut from France
gave a lecture on Behçet’s disease at the paediatric age. She defined paediatric BD as disease that meets the criteria for BD before the
age of 16 years; it resembles the adult disease
but has a stronger genetic component. In
juvenile BD, the first symptoms appear
before the age of 16 but the criteria are not
met until later. The symptoms of BD in children can overlap with those of other rare diseases or of more common inflammatory diseases. In one international survey, onset of
PBD occurred between the ages of 1 and 15
years, with 9–12 being the most common age
of onset; both sexes were affected in equal
numbers, but boys generally had a more
severe course. The causes may be infections,
toxins or genetic factors, but genetics are
very important in the cases with very early
onset. Most cases of familial BD have childhood onset.
Treatment recommendations are generally the
same as for adult BD, but most of the drugs
used are not licensed in children. Colchicine
is generally well tolerated and can prevent
relapses of uveitis. Corticosteroids are highly
toxic in children, so the minimum effective
dose should be used and growth hormone may
be needed to prevent growth retardation.
Azathioprine is effective and well tolerated
and can be steroid-sparing. There are some
case reports of low-dose thalidomide being
effective in treating mucocutaneous lesions.
There is little experience of using interferon in
children; some case reports in uveitis exist,
showing a steroid-sparing effect and ability to
stop treatment, although long-term relapse is
a possibility. Anti-TNF agents are used to
treat juvenile arthritis and Crohn’s disease,
but experience in PBD is limited so far.
The PED-BD cohort study is a prospective
study supported by the French Ministry of
Health to define the natural history of PBD.
Charts are reviewed annually to follow symptoms and treatment, and samples are collected to analyse DNA and biological data such
as C-reactive protein. About 50 children have
been included so far, and the organisers are
keen for more people to become involved.
Research in Morocco found that neurological
involvement was common in children with
BD (16%) and carried a poor prognosis, especially if there is parenchymal CNS involve-
-8-
ment.[17] A Turkish study found that around
3% of cases of neuro-Behçet’s had paediatric
onset.[18] German researchers reported successful treatment with interferon-alpha in two
boys aged 14 and 15 with severe treatmentresistant BD with CNS involvement; one
patient had complete remission and the other
showed marked improvement.[19]
Pathophysiology and basic science
A group of researchers in London investigated the healing of oral ulcers in Behçet’s
patients.[20] They found that during periods of
active ulceration, BD patients fail to increase
secretion of epidermal growth factor (EGF)
and transforming growth factor-alpha (TGF). These factors produced by the buccal
mucosa are important in wound healing. In
addition, levels of EGF receptor are high during remission and low during active ulceration, possibly as a result of infection, thus
compromising the healing process. Also in
the mouth, a Turkish group found increased
levels of the salivary peptide HNP 1-3 in BD
patients, especially in more severe disease;
this peptide has antimicrobial properties.[21]
Korean researchers looked at the cytokine
profile in cutaneous lesions of BD.[22]
Expression of IL-6 and TGF- was increased
in BD skin lesions. However, expression of
IL-17 was not increased in the BD lesions
despite being high in serum from BD patients
and in skin lesions of patients with psoriasis.
This work casts some light on the localised
pathogenic mechanisms in BD skin lesions.
Researchers based in the Netherlands and the
UK, noting the clinical and cytokine profile
similarities between BD and Crohn’s disease,
investigated three specific NOD2 (CARD15)
polymorphisms known to be associated with
CD.[23] None of the three variant alleles was
found in patients with BD. In fact, two of the
three alleles were less common in BD
patients than in controls, suggesting a possible protective role for these variants.[24]
Meanwhile, a Turkish group reported polymorphisms of an IL-18 promoter gene associated with BD.[25]
Work in the UK added weight to the argument
that BD is autoinflammatory rather than an
autoimmune disease by showing that two
genes regarded as masterswitches for autoimmunity are not associated with BD; indeed, one
of the genes seemed to be protective.[26] This
argument is also supported by the efficacy of
interferon-alpha in BD, which could otherwise
be seen as paradoxical given the immunostimulatory effects of interferon.[27] Interferon-alpha
is known to induce autoimmune diseases such
as systemic lupus erythematosus, psoriasis and
thyroiditis, but a response rate of 80–90% has
been reported in BD.
Disease assessment
The Behçet’s Syndrome Activity Score
(BSAS) is a patient-completed assessment
tool designed for use in research and clinical
practice. It takes about 2.5 minutes to complete and consists of 10 questions relating to
oral and genital ulcers, skin lesions and current disease activity. A US study in 67 patients
showed that the BSAS correlated well with
the assessor-completed Behçet’s Disease
Current Activity Form (BDCAF).[28] Further
external validation in other settings is needed.
Patients with BD have a high incidence of
chronic streptococcal infections before diagnosis, and a Korean group found that those
patients with a high titre of antistrepsolysin O
were more likely to have a history of tonsillitis and less likely to have genital ulcers than
other patients.[29] They suggested that in these
patients, ASO titres could be used to assess
disease activity and antibiotics might be effective in treating BD symptoms. Tunisian
researchers found that serum levels of B-cell
activating factor (BAFF) were higher in
patients with active BD than in those in remission, suggesting that this might be a marker
for disease activity.[30] In patients with active
disease, a positive correlation was found
between BAFF levels and skin lesions.
New international criteria
Professor Ahmet Gul from Istanbul introduced the session on the new International
Criteria for Behçet’s Disease (ICBD). It is
important to diagnose BD as early as possible
in order to start treatment to prevent longterm damage and improve quality of life.
However, developing criteria for diagnosis
and classification is difficult because of the
multi-system nature of the disease, geographical variations and the existence of different
subsets of patients. New biological markers
are becoming available but are hard to
include in criteria. For diagnostic purposes,
criteria need to include as many BD patients
as possible, but this may result in the inclusion of patients who do not have BD.
Fereydoun Davatchi from Tehran presented
the new ICBD criteria. Between 1946 and
2003, 15 sets of BD criteria were developed;
the best known of these are the ISG criteria
published in 1990. Validation studies have
shown these to have a good specificity but a
poor sensitivity and accuracy, leading to the
decision in 2006 to develop new criteria for
diagnosis of BD. In the new criteria, two
points each are given for genital aphthosis and
eye lesions, with one point each for oral aphthosis, skin lesions, vascular lesions and positive pathergy test; three points or more indicates BD. In validation studies in various settings, the new criteria have been shown to have
a sensitivity of 96.1%, a specificity of 88.7%
and an accuracy of 93.8%. They have been
presented at several conferences and published
in a textbook. Publication in a peer-reviewed
journal will follow, as well as further papers
defining the individual components.
EULAR recommendations
There were two presentations on the new
EULAR recommendations for the management of Behçet’s disease (published in the
Annals of Rheumatic Diseases in January
2008). One presentation covered the literature
review on which the recommendations are
based,[31] while the other described the nine
recommendations.[32] Of 137 articles that met
the inclusion criteria, only 20 were randomised controlled trials. Of the nine recommendations, only three (those for eye involvement, joint involvement and mucocutaneous
involvement) are based on category I evidence
(randomised controlled trials). Robust data on
the management of vascular, gastrointestinal
and neurological involvement were lacking.
The recommendations need to be validated in
different countries and settings and will be
extended and updated as new evidence
becomes available. In the discussion, delegates expressed concern that the recommendations had been produced by EULAR rather
than the ISBD and that the experts involved in
their development were limited in number and
were predominantly rheumatologists.
Looking to the future
In his lecture on new perspectives in Behçet’s
disease, Professor Hasan Yazici from Turkey
made a plea for more hypothesis-based
inquiry into BD, more external validation of
disease clusters and more basic scientific
work on venous endothelium. He proposed
that researchers should be looking for ways
in which BD differs from the well defined
autoinflammatory disorders and that the criteria used for classification and diagnosis
should be tailored to subspecialty and ethnic/geographical background and should be
dynamic in time.
Closing the conference, Colin Barnes
expressed some disappointment that no randomised controlled trials of treatments for BD
-9-
had been presented and no objective outcome
measures had been used. He hoped that by the
next conference, there would be fewer descriptive studies of the incidence and manifestations
of BD, with a move towards well designed
treatment studies and close co-operation
between clinicians and scientists.
Copyright the Behcets Syndrome Society UK
(www.behcets.org.uk) written by Clare Griffith.
August 2008.
References
1. Kikuchi H et al. Clin Exp Rheumatol 2008; 26 (Suppl
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2. Ohno S et al. Clin Exp Rheumatol 2008; 26 (Suppl 50):
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3. Ozyazgan Y et al. Clin Exp Rheumatol 2008; 26 (Suppl
50): S-39, Abstract H8.
4. Markomichelakis N et al. Clin Exp Rheumatol 2008; 26
(Suppl 50): S-30, Abstract E9.
5. Akhlaghi M et al. Clin Exp Rheumatol 2008; 26 (Suppl
50): S-40, Abstract H11.
6. Krause L et al. Clin Exp Rheumatol 2008; 26 (Suppl 50):
S-39, Abstract H6.
7. Davatchi F et al. Clin Exp Rheumatol 2008; 26 (Suppl 50):
S-37, Abstract H2.
8. Davatchi F et al. Clin Exp Rheumatol 2008; 26 (Suppl 50):
S-28, Abstract E2.
9. Vaiopoulos G et al. Clin Exp Rheumatol 2008; 26 (Suppl
50): S-35, Abstract G8.
10. Mumcu G et al. Clin Exp Rheumatol 2008; 26 (Suppl 50):
S-35, Abstract G6.
11. Assaad-Khalil S et al. Clin Exp Rheumatol 2008; 26
(Suppl 50): S-33, Abstract G1.
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S-35, Abstract G7.
13. Vieira M, Vaz Patto J. Clin Exp Rheumatol 2008; 26
(Suppl 50): S-36, Abstract G10.
14. Shariquie KE. Clin Exp Rheumatol 2008; 26 (Suppl 50):
S-34, Abstract G4.
15. Shariquie KE et al. Clin Exp Rheumatol 2008; 26 (Suppl
50): S-35, Abstract G9.
16. Marcolongo R et al. Clin Exp Rheumatol 2008; 26 (Suppl
50): S-11, Abstract B15.
17. Alaoui FZ et al. Clin Exp Rheumatol 2008; 26 (Suppl 50):
S-32, Abstract F1.
18. Akman-Demir G et al. Clin Exp Rheumatol 2008; 26
(Suppl 50): S-32, Abstract F2.
19. Koetter I et al. Clin Exp Rheumatol 2008; 26 (Suppl 50):
S-43, Abstract I6.
20. Hagi-Pavli E et al. Clin Exp Rheumatol 2008; 26 (Suppl
50): S-9, Abstract B9.
21. Mumcu G et al. Clin Exp Rheumatol 2008; 26 (Suppl 50):
S-11, Abstract B16.
22. Lee K et al. Clin Exp Rheumatol 2008; 26 (Suppl 50): S11, Abstract B14.
23. Kappen JH et al. Clin Exp Rheumatol 2008; 26 (Suppl
50): S-14, Abstract B24.
24. Kappen JH et al. Clin Exp Rheumatol 2008; 26 (Suppl
50): S-14, Abstract B25.
25. Keskin F et al. Clin Exp Rheumatol 2008; 26 (Suppl 50):
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26. Wallace GR et al. Clin Exp Rheumatol 2008; 26 (Suppl
50): S-15, Abstract B28.
27. Kötter I et al. Clin Exp Rheumatol 2008; 26 (Suppl 50):
S-30, Abstract E7.
28. Forbess C et al. Clin Exp Rheumatol 2008; 26 (Suppl 50):
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29. Oh SO et al. Clin Exp Rheumatol 2008; 26 (Suppl 50): S26, Abstract D8.
30. Ben Dhifallah I et al. Clin Exp Rheumatol 2008; 26
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31. Hatemi G et al. Clin Exp Rheumatol 2008; 26 (Suppl 50):
S-29, Abstract E4.
32. Hatemi G et al. Clin Exp Rheumatol 2008; 26 (Suppl 50):
S-29, Abstract E3.
Alternative Medicine: The Art of Reiki
One member’s experience with this alternative method of treatment…
by Cathy Fornabaio
In March of this year, I found myself overwhelmed with the amount of “stuff” I had
going on in my life. The stress was coming
from both a personal level and professional.
As many of you know I have a very aggressive
case of Behçet's Disease. Behçet’s has manifested in about every possible place it can in
my body. I have tried many of the medications
since I was diagnosed in 2001. Many did help
but for a limited time and then they seemed to
stop working. In speaking to many of our
members, I know this happens to be more
common than not. At this point, I had
tried everything I thought possible to get
off of the methylprednisolone. I take 16
mgs a day. This has been altered many
times throughout the seven years,
increasing the dose when I would flare
and then weaning back down as the disease started to quiet down. I have had
much success with cytoxan chemo therapy. I have done cytoxan for about 18
months straight, for two separate time
periods. It has helped me a lot, but I felt
that I wanted to give my body a break,
due to the fact that cytoxan kills off both
“good” and “bad” cells caused one to be more
at risk for different types of cancer. So for the
past two years, I have only relied on
Solumedrol IV infusions to help me get
through a bad flare. Unfortunately, it started to
become a monthly treatment. At times when I
would get a treatment and continue without
one for 5-7 weeks, I would start to flare. I can
not seem to go more than six weeks without
my body starting to flare up again.
Of course, these monthly infusions of
Solumedrol are affecting my body in negative
ways as well. I have osteoporosis. My
endocrinologist tells me I have the bones of
an 80 year old woman (I am thirty-something) and that is with being on a bone density medication for the past seven years. Also, I
have had both cataracts removed. I am starting with avascular necrosis in my left hip and
in my left knee as well. I have steroid induced
diabetes. I struggle everyday to lose weight, I
can not seem to do so.
With all of this in mind, I wanted so much to
try and get this disease under control so that I
can stop the monthly infusions. Also, I have
read about all the medications in my body
can produce toxins. I started out by doing a
GI cleanse which did help me. I then had
heard about detox foot soaks. I searched for a
practitioner in my area. While making a ton
of calls, I had the fortunate chance of meeting
a very special person. Daisy Coss. Daisy is a
reflexology practitioner.
This wasn’t what I was looking for but then
again maybe it was. Daisy and I talked for
about an hour the first conversation we had.
Daisy had suffered a few years back with
fibromyalgia. So Daisy understood where I
was coming from. I made an appointment for
the reflexology. Once I arrived at Daisy’s
office, we talked some more. That was when
Daisy mentioned that she also offers a Reiki
detox as well as the reflexology. Not knowing
much about Reiki, I asked some questions
and heard how the Reiki has basically cured
Daisy of her fibromyalgia. I decided to give it
a try. Like I said, at this point I would try anything that would maybe help in getting me off
these horrible steroids. By the way, I have a
love/hate relationship with the steroids. I
know that they have saved my life many
times, but by the same token, I am not sure
that they are not killing me slowly.
After receiving such positive feedback about one Behçet sufferer’s success with acupuncture, we’ve decided to run a series
on alternative medicine. It seems as though many members are
looking to other methods of healing after feeling overwhelmed
by the medicines that run their daily lives.
While the ABDA does not advocate any particular method of
alternative medicine, we do promote supplementing your prescriptions with something that may promote “inner” health
After the two hours of treatment, I felt wonderful. I felt less stressed, I was thinking very
clearly, and my entire body was in less pain.
I left Daisy’s office with some instructions on
how to start doing Reiki on myself. These
positive symptoms seemed to last for about
ten days. When I started to become overly
stressed, and every joint seemed to ache and
I had twenty mouth ulcers, I went for another
treatment. Again, the outcome was incredible. I started doing Reiki myself in between
my treatments and I have been able to keep
that non stressed, happy, positive lifestyle. I
have since taken the courses to become a
Reiki Master myself. I don’t think this is
something I can do on a regular basis for
others but I wanted to learn everything I
could about this alternate treatment.
I have since been able to cut my pain
medication from 120 pills a month to 75
pills. I also have reduced my monthly IV
infusion from 1000mgs a month to
500mgs. Along with that, I can go to
about seven weeks until I am ready for
another infusion. I have not had an outbreak of mouth sores in over two months.
I have started to live differently. I am very
positive and happy. I do not get stressed easily. I also do not fear like I used to, now I know
it will be OK. I know I still need to make more
progress, but I am headed in the right direction. I know soon I will be able to get off of
the steroids for good. I have since told Daisy,
The Reiki Master, Reflexology Practitioner
and Aesthetician, that sometimes when I walk
into her office, I see a halo over her head.
Of course when one finds hope, they want to
share this with all that can maybe find relief
in the same treatment. This is a little information about Reiki. Please feel free to email
me [email protected] or Daisy on her
website:
http://www.merchantcircle.com/business/Hol
istic.Body.And.Skin.Care.Rockland.County.
NY.Day.Spa.845-356-3771
and well-being. We hope these segments help you to understand a little more about different types of alternative medicine
and aid you in making a decision if any one of them might be
right for you.
We’d appreciate any feedback you have and, if you have a personal success story involving alternative medicine, please
share it with us and our many members whom it might help.
You can contact us at [email protected].
- 10 -
What is Reiki?
The International Center for Reiki Training
A Brief Overview
Reiki is a Japanese technique for stress
reduction and relaxation that also promotes
healing. It is administered by "laying on
hands" and is based on the idea that an
unseen "life force energy" flows through us
and is what causes us to be alive. If one's
"life force energy" is low, then we are more
likely to get sick or feel stress, and if it is
high, we are more capable of being happy
and healthy.
The word Reiki is made of two Japanese
words - Rei which means "God's Wisdom
or the Higher Power" and Ki which is "life
force energy". So Reiki is actually "spiritually guided life force energy."
A treatment feels like a wonderful
glowing radiance that flows
through and around you.
Reiki treats the whole person including body, emotions, mind and spirit
creating many beneficial
effects that include
relaxation and feelings
of peace, security and
well-being. Many have
reported miraculous results.
Reiki is a simple, natural and
safe method of spiritual healing and
self-improvement that everyone can use. It
has been effective in helping virtually
every known illness and malady and
always creates a beneficial effect. It also
works in conjunction with all other medical
or therapeutic techniques to relieve side
effects and promote recovery.
An amazingly simple technique to learn,
the ability to use Reiki is not taught in the
usual sense, but is transferred to the student
during a Reiki class. This ability is passed
on during an "attunement" given by a Reiki
master and allows the student to tap into an
unlimited supply of "life force energy" to
improve one's health and enhance the quality of life.
Its use is not dependent on one's intellectual capacity or spiritual development and
therefore is available to everyone. It has
been successfully taught to thousands of
people of all ages and backgrounds.
While Reiki is spiritual in nature, it is not a
religion. It has no dogma, and there is nothing you must believe in order to learn and
use Reiki. In fact, Reiki is not dependent
on belief at all and will work whether you
believe in it or not. Because Reiki comes
from God, many people find that using
Reiki puts them more in touch with the
experience of their religion rather than having only an intellectual concept of it.
While Reiki is not a religion, it is still
important to live and act in a way that promotes harmony with others. Dr. Mikao
Usui, the founder of the Reiki system of
natural healing, recommended that one
practice certain simple ethical ideals to
promote peace and harmony, which are
nearly universal across all cultures.
During a meditation several years after
developing Reiki, Dr. Usui decided to add
the Reiki Ideals to the practice of Reiki.
The Ideals came in part from the five principles of the Meiji emperor of
Japan whom Dr. Usui
admired. The Ideals were
developed to add spiritual
balance to Usui Reiki.
Their purpose is to help
people realize that healing the spirit by consciously deciding to
improve oneself is a necessary part of the Reiki
healing experience. In order
for the Reiki healing energies
to have lasting results, the client
must accept responsibility for her or his
healing and take an active part in it.
Therefore, the Usui system of Reiki is
more than the use of the Reiki energy. It
must also include an active commitment to
improve oneself in order for it to be a complete system. The ideals are both guidelines for living a gracious life and virtues
worthy of practice for their inherent value.
The secret art of inviting happiness. The
miraculous medicine of all diseases. Just
for today, do not anger. Do not worry and
be filled with gratitude. Devote yourself to
your work. Be kind to people. Every
morning and evening, join your hands in
prayer. Pray these words to your heart and
chant these words with your mouth. Usui
Reiki Treatment for the improvement of
body and mind. The founder, Usui Mikao
Reiki classes are taught all over the country and in many parts of the world.
© Copyright 1990-2008 The International Center for
Reiki Training. Reprinted with permission from
www.reiki.org
- 11 -
EXTRA!
EXTRA!
Read all
about it!
The ABDA is partnering with
other organizations to bring
you more global news about
Behçet’s Disease!
It is no secret that Behçet’s is very rare here
in the United States, right? So why not
work with our friends “across the pond” to
keep up with the latest news in the Behçet’s
communities over there?
The ABDA is trying to reach out to the
Behçet’s organizations all over the world to
see if we can’t bring even more information
to our members.
As you can see on page seven of this
newsletter, the Behçet’s Syndrome Society
(of the United Kingdom) was kind enough
to let us reprint their summary of the 13th
International Conference this year. Since
the ABDA has been unable to afford to
send representatives to these conferences
(we hope to change this in the future), this
was a great way for us to still bring home
information for our members.
The partnership with the Behçet’s
Syndrome Society will allow us to post
their quarterly newsletters on our premier
member areas of our website - and they
will do the same with our newsletter on
theirs. It’s remarkable how similar our
organizations are and it’s amazing to read
the stories from overseas that capture the
same courage and determination in their
members as we see in our own!
Stay tuned to our website for more information on this partnership and look for the
Behçet’s Syndrome Society newsletters in
the RESOURCE area of our site.
And remember - you can send your feedback
or stories and ideas for our newsletter to
[email protected]. We always love
to hear from you!
The Fentanyl patch can be fatal to your pets!
One member’s terrifying experience - don’t let it happen to you!
by Sandy McElgunn
This is a warning to all patients using the Fentanyl
Pain Patch. A few months ago, we almost lost our
little Bichon Frise puppy named Frosty. I had
walked him that morning, twice, and needed to
take a hot shower to help my aching joints. I took
a half hour shower and came out to find Frosty
passed out, hardly breathing laying on the
ottoman. Not knowing what was wrong, I frantically ran to get my keys to drive Frosty to our
neighborhood vet. Something caught my eye laying on the floor besides him. I knew instantly
when I saw the pain patch laying on the carpet.
The pain patch had bite marks throughout the
patch. The patch must have fallen off my skin and
he found it and chewed on it. I scooped up his lifeless, limp, seven pound body and I ran to my car.
When we reached the vet, I ran in carrying
Frosty, screaming “Help my puppy. He has
chewed my Fentanyl patch”. The vet technician
grabbed Frosty, put him on the scale, and told me
to follow him. One of the veterinarians came in
and told me to stay calm. He said that there is a
drug called Naloxone that will counteract the
drugs that Frosty consumed by chewing the
patch. The vet said this medication will reverse
any damage that the Fentanyl is doing to the
puppy. They injected this medication through the
small veins in Frosty’s little front leg. Within
seconds, Frosty’s eyes cleared, he woke up and
started licking my face. Frosty was back to himself and I just started
crying. I was crying
tears of joy. I could not believe my eyes, as I The Vet explained to me that three things had
watched this puppy become full of life and ener- saved Frosty’s life:
gy again. The vet told me that not all animal
1. The fact that Frosty did not swallow the patch.
hospitals carry this drug. He explained that the
If he did swallow it, it would have been hard to
larger hospitals usually keep it on hand for emerretrieve and/or we would have never known
gencies. Frosty had to spend the rest of the day at
what was wrong with him because there would
not be any patch to find. Getting the injection
in a timely manner really saved Frosty.
2. I am only on 25 ml. patch. Had it been a
stronger dose, it probably would have instantly killed a smaller dog.
3. My doctor and I had recently decided instead
of increasing the patch to 50 ml. I would
change to every two days instead of every
three. I had forgotten to change it the day
before so it was a three day patch with most
of the fentanyl used up. Thank God for
Behçet’s memory loss!
A month later, Frosty’s blood test was back to
normal. His liver levels were normal as well. He
had no need for more medication. This little
sweet creature brings me so much joy on days
that I’m feeling so bad, that I had to share our
scare with everyone. Please be sure to tape the
edges of your patch with surgical tape to ensure
that it will not fall off. I have used the pain patch
for over five years and never had one fall off like
this time. Also, I never throw them away in the
trash can. Always flush them away as directed.
the animal hospital. He received several treatments of charcoal to absorb the rest of the
Fentanyl in his stomach. Frosty had to have IV
infusions of fluid. Also they gave him another
shot of Naloxone. Frosty was released later that
evening. Blood was taken to make sure all of his
levels were ok. Tests showed his liver enzymes
were high. Frosty was sent home with a medication to help his liver return back to normal activity. Better to be safe than sorry!!
FDA Guidelines for Drug Disposal
Is your medicine
cabinet filled with
expired drugs or medications you no longer
use? How should you
dispose of them?
Most drugs can be
thrown in the
household trash,
but
consumers
should take certain precautions before tossing
them out, according to the Food and Drug
Administration (FDA). A few drugs should be
flushed down the toilet. And a growing number
of community-based "take-back" programs offer
another safe disposal alternative.
Guidelines for Drug Disposal
FDA worked with the White House Office of
National Drug Control Policy (ONDCP) to
develop the first consumer guidance for proper
disposal of prescription drugs. Issued by
ONDCP in February 2007, the federal guide-
trash and recycling service (see blue pages in
phone book) to see if a take-back program is
Follow any specific disposal instructions on the available in your community.
drug label or patient information that accompanies the medication. Do not flush prescription FDA's Director of Pharmacy Affairs, Ilisa
drugs down the toilet unless this information Bernstein, Pharm.D., J.D., offers some additional tips:
specifically instructs you to do so.
lines are summarized here:
If no instructions are given, throw the drugs in
the household trash, but first:
Take them out of their original containers and
mix them with an undesirable substance, such as
used coffee grounds or kitty litter. The medication will be less appealing to children and pets,
and unrecognizable to people who may intentionally go through your trash.
Put them in a sealable bag, empty can, or other
container to prevent the medication from leaking or breaking out of a garbage bag.
Take advantage of community drug take-back
programs that allow the public to bring unused
drugs to a central location for proper disposal.
Call your city or county government's household
- 12 -
• Before throwing out a medicine container,
scratch out all identifying information on the
prescription label to make it unreadable. This
will help protect your identity and the privacy
of your personal health information.
• Do not give medications to friends. Doctors
prescribe drugs based on a person's specific
symptoms and medical history. A drug that
works for you could be dangerous for someone
else.
• When in doubt about proper disposal, talk to
your pharmacist.
• Bernstein says the same disposal methods for
prescription drugs could apply to over-thecounter drugs as well.
residues enter water systems is by people taking
medications and then naturally passing them
through their bodies, says Raanan Bloom,
Ph.D., an Environmental Assessment Expert in
FDA's Center for Drug Evaluation and
Research. "Most drugs are not completely
absorbed or metabolized by the body, and enter
the environment after passing through waste
water treatment plants."
Why the Precautions?
Disposal instructions on the label are part of
FDA's "risk mitigation" strategy, says Capt. Jim
Hunter, R.Ph., M.P.H., Senior Program
Manager on FDA's Controlled Substance Staff.
When a drug contains instructions to flush it
down the toilet, he says, it's because FDA,
working with the manufacturer, has determined
this method to be the most appropriate route of
A company that wants FDA to approve its drug
disposal that presents the least risk to safety.
must submit an application package to the
About a dozen drugs, such as powerful narcotic agency. FDA requires, as part of the application
pain relievers and other controlled substances, package, an assessment of how the drug's use
carry instructions for flushing to reduce the would affect the environment. Some drug applidanger of unintentional use or overdose and cations are excluded from the assessment
illegal abuse.
requirement, says Bloom, based on previous
agency actions.
For example, the fentanyl patch, an adhesive
patch that delivers a potent pain medicine "For those drugs for which environmental
through the skin, comes with instructions to assessments have been required, there has been
flush used or leftover patches. Too much fentanyl no indication of environmental effects due to
can cause severe breathing problems and lead to flushing," says Bloom. In addition, according to
death in babies, children, pets, and even adults, the Environmental Protection Agency, scientists
especially those who have not been prescribed to date have found no evidence of adverse
the drug. "Even after a patch is used, a lot of the human health effects from pharmaceutical
drug remains in the patch," says Hunter, "so you residues in the environment.
wouldn't want to throw something in the trash
that contains a powerful and potentially danger- Nonetheless, FDA does not want to add drug
residues into water systems unnecessarily, says
ous narcotic that could harm others."
Hunter. The agency is in the process of reviewing all drug labels with disposal directions to
Environmental Concerns
assure that the recommended methods for disDespite the safety reasons for flushing drugs, posal are still appropriate.
some people are questioning the practice
because of concerns about trace levels of drug Another environmental concern lies with
residues found in surface water, such as rivers inhalers used by people who have asthma or
and lakes, and in some community drinking other breathing problems, such as chronic
water supplies. However, the main way drug obstructive pulmonary disease. Traditionally,
many inhalers have contained chlorofluorocarbons (CFC's), a propellant that damages the
protective ozone layer. The CFC inhalers are
being phased out and replaced with more environmentally friendly inhalers.
Depending on the type of product and where
you live, inhalers and aerosol products may be
thrown into household trash or recyclables, or
may be considered hazardous waste and require
special handling. Read the handling instructions on the label, as some inhalers should not
be punctured or thrown into a fire or incinerator.
To ensure safe disposal, contact your local trash
and recycling facility.
This article appears on FDA's Consumer Health
Information Web page (www.fda.gov/consumer), which features the latest on all FDAregulated products. Sign up for free e-mail subscriptions at www.fda.gov/consumer/consumerenews.html.
For More Information
Proper Disposal of Prescription Drugs Fact
Sheet and Video Clip
www.ondcp.gov/drugfact/factsht/proper_disposal.html
SMARxT Disposal Campaign
www.smarxtdisposal.net
Albuterol Inhalers: Time to Transition
www.fda.gov/consumer/updates/albuterol0530
08.html
Behçet’s Disease
Books and Resources
Payment by VISA/MasterCard accepted; also accepting checks or money
orders from U.S. banks only (payable to Central Vision Press)
Payment by VISA / MC / Check / M.O. enclosed
Essential Guide to Behçet’s Disease
Special ABDA member rate is available for
this book through
DECEMBER 31, 2008
Credit Card # ____________________________________________________
Exp Date ___________ Signature ____________________________________________
$25 including shipping,
for U.S.addresses only.
(Outside the U.S., total price is $30).
Name : ___________________________________________________________________________
Also available through the online store at
www.bdbooks.info:
You Are Not Alone: 15 People with Behçet’s
Address: _________________________________________________________________________
$18 additional if added to above order.
- 13 -
GIFT/DONATION FORM
Your gifts and donations help the work of the ABDA in locating patients with Behçet’s Disease, providing information and
support to patients and their families, and educating medical professionals.
The American Behçet’s Disease Association is a 501(c)3 non-profit organization registered in the State of Minnesota. We provide many services to persons with Behçet’s Disease, their families and the medical community serving them. The ABDA is only one organization and there
are no local chapters. The ABDA executive board, with a few exceptions, is made up of others like yourself who have Behçet’s Disease. They
all volunteer their time and are not compensated in any way. We do not receive any governmental funding or funding from any other source
except contributions through membership, private donations and ABDA fundraising events. We rely on your contributions to fund all activities. Would you please consider a donation with a check, credit card, stock assets, or whatever you feel would be helpful? Thank you and we
appreciate your support.
GIFTS
DONATIONS
Gifts are a wonderful way to let someone know you care. An
ideal gift for companies and vendors also because with each
gift, the listed person will get an acknowledgement of your
generosity.
We are a non-profit organization and rely on donations to fund
such events as the National Conference. Your donations also
go toward bringing information to Behçet’s patients, healthcare
professionals, caregivers and family.
Enclosed is my gift of $__________
Enclosed is my donation of $__________
■ In Memory ■ In Honor
Receipt Information:
of _______________________________________
Acknowledge this gift to: Name:
__________________________________
Name:
__________________________________
Address:
__________________________________
Address:
__________________________________
City:
__________________________________
City:
__________________________________
State / Zip : __________________________________
State / Zip : __________________________________
Telephone:
__________________________________
(Gifts are listed in our newsletter unless otherwise noted)
E-mail:
__________________________________
(Donations are listed in our newsletter unless otherwise noted)
■ Do not list in newsletter
■ Do not list in newsletter
ADDITIONAL INFORMATION
PAYMENT TYPE
■ Please send me information on planned giving,
■
estate planning and stock donations.
Please send me information about how my
company can match my donation to the ABDA.
■ Enclosed is my check for: ____________________
■ VISA
■ MasterCard
Number:
Please fill out this form and mail with your gift or donation
(payable to The American Behçet’s Disease Association) to:
___________________________________
Exp. Date: ___________________________________
The ABDA • PO Box 869 • Smithtown, NY 11787-0869
OR FAX TO: 1-480-247-5377
Signature: ___________________________________
- GIFT DONATION FORM -
Give a very special Holiday gift!
Would you like to do something special for your loved one’s birthday, anniversary or Holiday occasion? How about something that is
unique and will really make a difference? Consider making a donation to the ABDA in your loved one’s name. By doing so, you will
help support the ABDA and its mission as well as educate others
about Behçet’s Disease. For each donation, we will send a personal
note to the recipient telling them that your generous donation was
made on their behalf. In addition, we will also print an acknowledgement in our newsletter. You can give a donation in several ways:
Fill out the form above and the information to the right and fax it
with Credit Card info, mail with your enclosed check or donate
online at www.behcets.com. We are able to accept Visa/MasterCard.
You can also contact the Secretary, Denise Corrado at
[email protected] with any questions. Thank you for considering
the ABDA for your gift-giving needs.
For gifts other than In Memory or In Honor of, please list the details
here so we can send an appropriate acknowledgement.
Occasion: ______________________________________________
Who To: ________________________ Date of Birth: ___________
Special Note: ___________________________________________
______________________________________________________
From: _________________________________________________
Your Telephone (in case we have questions) ___________________
- 14 -
News from the ABDA...
Behçet’s Disease to Hit Public Television!
Part of the ABDA’s mission is to raise awareness about Behçet’s Disease. With awareness,
comes diagnosis. With more diagnosis, comes
more help in the forms of research, grants, etc.
mercial. This will air on Cable
Television on several network channels.
(We will post a schedule on our website
when we receive it).
The ABDA’s Board of Directors has decided to
invest in an opportunity that we were presented with this past quarter. The National Medical
Report (hosted by Hugh Downs) contacted the
ABDA as one of thirty potential organizations
that they were interested in doing a piece on.
• A 6-8 minute Corporate Documentary
that we will have a link to on our website to help educate and raise awareness.
This will also be placed on Google
Video and You-Tube for public viewing.
While there is a large investment to be made
into the production costs, we believe that the
benefits that the public awareness will bring
will be well worth it.
After two phone interviews with our Executive
Director, the ABDA was chosen as the group
they wanted to highlight for this piece.
We plan to make the 6-8 minute educational
video available to the public on DVD for a
small fee (to cover the duplication and shipping costs).
The production will consist of several pieces
that the ABDA will own upon the completion
of the project.
• A 3-5 minute piece that
is educational about
Behçet’s Disease and is
aimed at raising awareness about the disease
as well as our organization.
The video will be shot during
the weekend of this year’s
Walk for Behçet’s Disease in
New York, and we hope to
have the editing wrapped up
and on air by year-end.
This piece will be aired
between programs on
public television channels all over the world
for one year.
This is the first investment of
its kind for the ABDA and we
are hopeful that this will raise
the type of awareness that
Behçet’s Disease desperately
needs. Using this awareness, we will work
harder than ever to raise funds to begin
research in America.
It will also be formatted for our website
and distributed to You-Tube and Google
Video with appropriate key words.
Please stay tuned to our website and future
newsletters regarding this exciting project!
• A one-minute PSA (Public Service
Announcement) to be aired like a com-
VOLUNTEERS NEEDED
Medical Liaisons
Do you work in the Volunteers must have:
Medical Profession, or • Professional Healthcare industry background
know someone who does • Excellent computer, internet and communicawho may want to help us fight Behçet’s Disease?
tion skills (phone conversations, e-mail)
• Be responsible & highly organized
We are looking for a few people who may have • Be passionate about helping fight Behçet’s!
an hour or two a week to help us with some medical-related projects within the ABDA. You don’t Please contact [email protected] to find out
have to be a doctor or nurse, but experience in more about these highly rewarding positions!
the medical industry would be very helpful!
NEW MEMBERS:
ABDA Premier Members (May, 2008 - August, 2008)
CARMEN AROCHO-BLANCO
STEPHEN BARONE
CAROLINE BHAGAT
BARBARA BRECHER
MARNIE CALAMARI
CAROLANN CATANIA
TONYA CATER
JLLL COLE
CAROL COLLINS
WILLIAM CORDELL
CYNTHIA DESMOND
KAREN EARL
BARBARA FESSLER
SHELLEY GILFOIL
GINNY GILL
PHYLLIS GREER
KAREN HART
MARILYN LEE HESS
YOON JINNY
SHELLI KNIEVEL
DELANEY LA ROSA
KRISTY LABUDA
ASHLEY LEFFERS
LESA LEPAGE
PENNY MOIR
CATHERINE MRAKOVCICH
BECKY OTTEMAN
DAVID PETERSEN
ROSE PETTIBON
JANE PLAUT
ROBERT REMMENGA
DEAN RHODY
LIBBY ROBERTS
MARCIE RUCKER
NANCY RUHL
BRANDY RYMAN
DIANA SCHENDEL
ROSANNE STATE
BERNADETTE STRETZ
MARILYN WEESIT
COLLEEN WENDLAND
CHELSEA YOUNG
CONTRIBUTORS:
Donations made (May, 2008 - August, 2008)
VALERIE ADELMAN
MARK & CAROLE
HICKMAN
LARRY BANKS
HEATHER JOHNSON
MICHAEL BURKE
PATRICIA LAFFEY
VICTOR CALAMAN JR.
MARLENE
MERRIFIELD
ENRIQUE CROOKS
CELE
MOYSE
JARED & HOPE DANIELS
NET PROFIT GROUP
WEISS
MARGERY SALZMAN
KIMBERLEE DORST
ANNETTE SHEPHERD
LINDA FISHER
MARTHA WHARTON
BART & GLORIA
LOTTIE WILCOX
FLAHERTY
ANDREE WILLIAMS
TERRY GOLDBERG
IN HONOR OF:
Donations made (May, 2008 - August, 2008)
GILLIAN CHOUINARD
MARISOL CULSHAW
MARY BURKE
MRS. PAT KOVALCHICK
SAMANTHA CIMINI
TABETHA RITCH
& EVERYONE AFFECTED BY BEHÇET’S DISEASE
IN MEMORY OF:
Donations made (May, 2008 - July, 2008)
KIMBERLY KING
WENDY SMITHHART
Important Dates...
What
When
Where
How
Current Treatments for Behçet's Disease - NY
October 17
Uniondale, NY
www.behcets.com/walk
2008 Walk for Behçet’s Disease - NY
October 18
East Meadow, NY
www.behcets.com/walk
We would like to extend our sincerest
gratitude to the printing and mailing
companies that generously donate the
services we use to bring you this newsletter!
ACR/ARHP Annual Scientific Meeting
October 24 - 29 San Francisco, CA
www.rheumatology.org
Thank you!
American Society of Human Genetics (Annual) Nov 11-15
Philadelphia, PA
www.ashg.org
- 15 -
American Behçet’s
Disease Association
PO Box 869
Smithtown, NY 11787-0869
•
•
•
•
•
FIRST CLASS
POSTAGE
PA I D
Rockville Centre,
NY 11570
Permit No. 186
The 13th International Conference on Behçet’s Disease
Dispose of Those Drugs - PROPERLY! One Member’s Terrifying Experience
How to Communicate with a Chronically Ill Person
Sanya Richards, OLYMPIC GOLD MEDALIST, walking with the ABDA in New York!
Behçet’s Disease Hits Public Television!
Reaching out to all of those affected by Behçet’s Disease...
Beijing Gold Medal Sprinter Slows to a Walk to Help Fight Her Rare Disease
Sanya
Richards
stunned millions of
viewers as she overcame what looked like
an insurmountable
deficit to surpass the
Russians and win the
Gold Medal for the
US Women’s 400x4
Relay team in Beijing.
It was truly a heartpounding event for
anyone lucky enough to be watching.
What may be more amazing about this 23-year
old US Team Anchor, a seemingly perfect picture of strength, health and beauty, is that just
one year ago Sanya was facing the almost
unbelievable diagnosis of a rare and sometimes
debilitating illness called Behçet’s Disease.
Behçet’s Disease (or Behçet’s Syndrome) is an
autoimmune disorder that causes vasculitis
(inflammation of blood vessels) in the organs
of the body. While Behçet’s can affect every
organ of the body, it often presents with mouth
and skin ulcers and sometimes extreme fatigue
in the beginning stages – as it did with Sanya.
Working through her rigorous training with a
cup in her mouth to prevent ulcers from sticking together, and wrapping the lesions on her
legs to keep the sun off of them, Sanya was not
going to let this strange illness keep her down
for long.
While Sanya was fortunate enough to be diagnosed early and began treatment to control her
disease immediately, many are not this lucky.
Behçet’s can affect each individual differently.
It is so rare (under 20,000 diagnosed cases in
the United States), that it is very common for
sufferers to be misdiagnosed or not diagnosed
for several years as their symptoms progress
into a debilitating state. Men, women and even
children can be affected and are left feeling
scared, confused and alone as they try to cope
with a myriad of symptoms affecting them.
Behçet’s may ultimately cause blindness,
arthritis and complications of the pulmonary,
intestinal and circulatory systems in a large
number of patients, especially if not treated.
Any of this would be devastating to an
Olympic runner’s dreams of gold, but not for
Sanya. Exemplifying both her incredible determination to battle through this potentially devastating illness and her will to do even more to
help others, Sanya is taking her Olympic
medals for a walk in East Meadow, New York
this October.
As an honorary Board Member and
Spokesperson for the American Behçet’s
Disease Association (www.behcets.com),
Sanya is filming several Public Service
Announcements as well as attending the 2008
Walk for Behçet’s Disease this October to help
raise awareness about her rare illness.
The Walk for Behçet’s Disease will be held on
October 18th, 2008 at Eisenhower Park on
Long Island (East Meadow, New York).
Sanya’s doctor, Yusuf Yazici of the Behçet’s
Syndrome Center at NYU Hospital for Joint
Diseases in New York City, will be giving a
talk about the current treatments of Behçet’s
Disease the evening before the walk.
The proceeds of this fundraising event will go
toward educating the medical field and raising
awareness about this rare disease so that more
people can be diagnosed at an earlier stage
like Sanya.
For more information about Behçet’s Disease,
the 2008 Walk for Behçet’s Disease, or to
donate, visit www.behcets.com.