Download August 2011 - Myasthenia Gravis Foundation of America

(HOVAK is Osage for inner strength, courage)
(HOVAK
is Osage for inner strength, courage)
Myasthenia Gravis
Patient Support Group Meetings
Our MG support groups are a great way for patients to connect with each other, share strengths and
hope, and offer solutions to others going through similar trials with their myasthenia gravis.
August 7, 2011– 2:00 pm, Classroom 1– Tulsa Support Group – Kristy Marshall,
R.N with Oklahoma Blood Institute will be speaking on use of Plasmapheresis in Myasthenia Gravis.
September 11, 2011 – 2:00 pm – Oklahoma City Support Group – topic to be announced later.
November 6, 2011 –2:00 pm, Classroom 1– Tulsa Support Group – topic to be announced later.
Oklahoma City Patient Support Group meetings, unless otherwise noted, are held in the Central
Oklahoma Cancer Conference Center, at SW 44th St. & S Western Ave., which is next to Integris Southwest Medical Center. Do not enter the Cancer Conference Center at the front doors, enter through the garden area that is to the right of the front doors, look for our MG chapter‟s red arrow
signs pointing the way to our meetings.
August 2011
Inside this issue:
MG Support Group
Pictures
2
A Time to Quilt
3
Lifestyle Tips for
Myasthenics
4
Myasthenia Gravis &
Vaccinations
6
Patient & Prescription
Assistance
7
Moving MG Research
Forward
8
IVIg Option for MG
9
Planned Giving
10
New MG Book Review
Tulsa Patient Support Group meetings, unless otherwise noted, meet at Saint Francis Hospital,
61 & Yale Ave., in the Education Center (on east side of the hospital. Park in the employee parking
garage that is near the meeting area. Look for our MG chapter‟s red arrow signs pointing the way to
our meetings.
Honorariums,
Memorials & Dues
Why Should You Attend a MG Support Group?
Mission
Where else can you go that others will empathize and understand your experiences with MG.
You will realize that you are not alone in your battle with MG.
You can gain more information about living with MG.
You have the opportunity to share experiences and ask questions of members living with MG.
You have an opportunity to help others and make new friends.
If there is not a support group in your area consider starting one. The Chapter office can help.
Contact us at 918-494-4951 or at [email protected].
2012 National MGFA‟s Conference
April 25 - 27 Las Vegas, Nevada at Bally‟s Hotel
11
Statement:
The Mission of the Oklahoma Chapter of the Myasthenia Gravis Foundation, Inc. is to provide
education and patient services to improve the lives
of all people affected by
MG and to promote research to find a cure for
myasthenia gravis.
Oklahoma Patient Support Group
Tulsa Picnic June 5th
Good food and fellowship was had by all who attended!
OKMGF Director Peggy Foust,
Margret Feller and Joe Warlick
Karen Warlick & Jennifer Caviston
We had a great time in visiting,
sharing and of course eating!!
Angie, Kent Foust, the Stones & Bee Foust
Ray & Doris Vanscoy
Bill & Shirley Foust Stone
Oklahoma City Picnic June 11th, 2011
Fred & Juanita Escott
Hank Bowen
Page 2
Mary Ann Tate
The Basham family
Jeff & Nick Carper
Jeanmarie Carper & Roberta Seaton
The Oklahoma Chapter of the Myasthenia Gravis Foundation of America, Inc.
A Time to Quilt
by Mary Ann Tate
I grew up sleeping under Grandma‟s quilts. She made me a special Sunbonnet Sue
quilt which I still love even though it‟s tattered and torn. Mother stitched our clothing until I
took over after excelling in seventh grade Home Economics. I loved sewing. I watched Mom
save scraps from our clothes and pack them away to “make a quilt some day.”
Though I inherited those scraps and the desire to quilt, I‟d never watched the process.
Overwhelmed by the thought of putting together those little pieces, I stuck to sewing clothes on
a Bernina 830 I purchased in 1978.
In 1996 as I pursued my life‟s dream of singing in a band, disaster struck. Tests revealed I had a neuromuscular disease called myasthenia gravis. I progressed from singing fourhour shows three to five nights a week to barely being able to speak, walk, swallow or breathe. I
spent three years in bed or a wheelchair trying to climb out of a very deep hollow called despair.
During that time, God was teaching me patience. I only had energy to be out of bed a
few minutes at a time. I learned that most television was not worth watching except for HGTV‟s Simply Quilts which I flipped
on for every episode.
After two years I felt so desperate to make a quilt, I vowed to do anything to accomplish my goal. With a book from the
library, x-ray film, a marker to trace the pattern, and lots of perseverance, I began recreating Grandma‟s Sunbonnet Sue quilt in
ten-minute sessions at the sewing machine. I‟m preserving Grandma‟s legacy so lovingly stitched by hand more than half a century ago. My quilt will be made to look like the old, but created through the technology of the twenty-first century.
Taking the scraps of Mom‟s fabric collection, snippets of my time, bits and pieces of my energy, and lots of courage
and faith, God is stitching everything together to make me whole and healthy again. I‟m fulfilling Mother‟s dream at last. Quilting has given me small goals to accomplish, a passion and a reason to live, and new quilting buddies to share the adventure with.
From: *Heavenly Patchwork !! Quilt Stories to Warm Your Heart by Judy Howard,
Copyright 2007, Dorcas Publishing www.heavenlypatchwork.com
“To everything there is a season,
A time for every purpose under heaven:
and a time to sew;”
Ecclesiastes 3:1 &7
Mary Ann Tate is a member of the Oklahoma Chapter of the Myasthenia Gravis Foundation of America, Inc. and attends the Oklahoma City Patient Support group meetings.
Mary Ann‟s story „A Time to Quilt‟ is printed in Heavenly Patchwork II — Quilt Stories to Warm
Your Heart, by Judy Howard. It is a hard-bound anthology of true stories about contemporary women and their
Oklahoma pioneer ancestors. Book profits go to quilting organizations that make charity quilts. „A Time to
Quilt‟ is reprinted here with the permission of Judy Howard.
The Oklahoma Chapter of the Myasthenia Gravis Foundation of America, Inc.
Lifestyle Tips for Myasthenics
HOUSE WORK
Forget the big Saturday cleans. Break up house work into manageable smaller tasks, with plenty of rest between tasks.
Ask family and friends for assistance, and learn to accept assistance when offered.
Plan your routine so that you avoid unnecessary repetitions.
Use a cart or basket on wheels to carry things from one part of the house to the other.
Use energy saving devices - electric appliances and power tools over manual appliances.
Avoid chemicals around the house where possible - some products may contain agents that adversely affect myasthenics,
others cause allergies to play up. There are now many chemical free environment-friendly products on the market - good
for you and good for the planet!
INFORMATION SHEET
If you are susceptible to myasthenic crisis, it is a good idea to carry some information on MG. If you collapse in the street,
with talking and breathing difficulties, the information sheet provides prospective good Samaritans with immediate means
of assistance. The information sheet can include the following details:
The name of your condition.
MG symptoms.
Names of your neurologist and GP.
Names of all medications you are currently taking.
Symptoms of Mestinon overdose.
List drugs or treatments which worsen MG (see section on Drugs non MG related above)
Telephone numbers of two friends or relatives.
KITCHEN
The aim in the kitchen is to minimize effort. To achieve this, you can:
Enlist the help of family or friends to assist in general house work, including cleaning of the kitchen.
Use labor saving devices and products (electric blenders and mixers over manual, vacuum over the broom, ready made
over start from scratch).
Use a tap mixer rather than the old-fashioned tap spindles - a tap mixer can control quantity of water flow and temperature
in one easy movement.
Place often used utensils and crockery in easy to get to locations so that you are not moving other things to get to them.
Use smaller, easy to manage storage containers (heavy containers could deplete your energy). Avoid screw tops.
Break up housework into smaller activities - do a little each day rather than one monumental effort that will leave you bed
ridden for the next two days!
Ensure all of your cupboards, drawers and windows are easy to open and close.
PERSONAL HYGIENE
For females, opt for a low maintenance hair style (something that does not require a lot of blow-drying and brushing). If
high maintenance is a must, then consider regular visits to your hairdresser or enlist the help of family and friends to help
with your 'do.
If washing your hair causes fatigue of your arms, have somebody help you (it would be handy to have a shower head with
flexible hose for this purpose).
Try an electric toothbrush.
Try an electric shaver. If shaving causes fatigue of the arms, have somebody help you.
Avoid hot baths. Keep showers short and warm (not hot as heat aggravates MG).
Sit to brush teeth, blow dry hair, shave, etc. if you are tiring easily.
Page 4
The Oklahoma Chapter of the Myasthenia Gravis Foundation of America, Inc.
SHOPPING
Shopping can be a daunting task. To minimize its impact:
Wear comfortable clothes and comfortable shoes, you don‟t want to be fussing with your clothing as well as your muscles!
If the shopping expedition is to be a long one, ensure that you take medication beforehand, and that you have medication with
you. Make sure that you have a good rest before you leave the house.
If you expect to be carrying heavy items such as grocery shopping, then it is probably best to take somebody with you to carry
the groceries or push the cart. At home, unload the light items and leave the heavy items for others to deal with. If you do not
have anybody to help you with groceries, consider using a lightweight shopping cart (they were popular with the elderly years
ago, but are a fantastic and environment-friendly alternative to plastic shopping bags).
If you can, use private transport - the use of public transport can be a battle in itself (particularly climbing onto buses, or managing stairs at the train stations).
If you are not able to venture outside, consider internet shopping. There are now a number of stores and services that bring
groceries right to your kitchen.
Air conditioned shopping centers are more comfortable and convenient than strip shops - they provide for plenty of resting
spots and most have a concierge service to assist if you get into difficulties (ex: arranging taxis, and wheel chairs may be
available if you have difficulties walking).
Obtain a handicapped parking sticker if you suffer from walking or other difficulties.
If it will help, use a walking aid (or those neat scooters to get to get around).
VISUAL DIFFICULTIES
If double vision is a problem, DO NOT DRIVE. If droopy eyelids also affect your vision, then you should also avoid driving.
Use an eye patch while reading or watching TV to relieve double vision. Alternate the eye patch from one eye to the other to
avoid eye strain.
Rest your eyes before leaving the house.
Outdoors, use sunglasses and sun visors to keep glare away from your eyes.
Some myasthenics suffer from dry eye as they are unable to fully close their eyelids when sleeping. To alleviate the problem,
use eye lubricant before going to bed and tape your eyes closed.
If you are having difficulty keeping your eyelids up, then tape them open (probably not the best look outside of the home!).
Have your eyes tested at regular intervals. Inform your optometrist of your condition (so they can hold up your eyelid during
eye examinations). - This is especially important for myasthenics on steroid based medication to assist in the early detection
of glaucoma.
MG does cause blurred vision, so be aware of this when having eyes checked.
Your MG Story
We invite you to submit your MG story to our Oklahoma HOVAK newsletter. Please share your story about living with MG with other
Chapter members. What were your first symptoms? How long or how many Dr‟s did you have to see before you were diagnosed?
What Meds have helped control MG? How did this affect your family, friends and job? Please share your story with us. We would love
a two page summary of your “Living With MG” for inclusion into a future Chapter newsletter.
The Oklahoma Chapter of the Myasthenia Gravis Foundation of America, Inc.
Page 5
Myasthenia Gravis and Vaccinations
Madeleine Batenjany, MSN, RN, ANP-C
Individuals with MG are at risk for the complications of infections or disease but MG itself is not a reason to avoid vaccination. It
is important to protect against certain viruses or invading germs which can cause an exacerbation of MG. An individual may also
be at risk for complications of infections due to other health problems in addition to their MG.
Vaccines help an individual reduce their chance of getting an infectious disease. Some examples include flu, pneumonia, tetanus,
hepatitis A or B, etc…
Always discuss your vaccination needs with your physician. There can be some restrictions to having certain vaccines or the timing
of administration due to an individual‟s allergies, or use of immunosuppressive and immunomodulatory drugs such as Prednisone,
Imuran (azothiaprine), Cellcept (mycophenolate mofetil), Cyclosporine, and IVIG.
The purpose of vaccination is to provide immunity against a specific organism(s) which can cause a particular disease or in the case
of influenza reduce the risk for the suspected disease causing strains of flu for the season. We are born with an immune system to
help fight infection and diseases by invading bacteria and viruses. The body considers these as foreign antigens and makes antibodies to fight them and help protect us from the disease they can cause. When an individual is immunosuppressed or compromised,
they are at greater risk for infections and disease.
How Vaccines Work?
Vaccines contain antigens or parts of antigens which cause diseases. The antigens in vaccines are either killed or made very weak.
They are usually given by injection and are strong enough for the body‟s immune system to make antibodies against them. The
cells involved in making antibodies become “memory cells” and can remain for a long time or may require a booster vaccine to
help them produce more antibodies to prevent re – infection of a specific disease.
Vaccines can be described as:
1.
Live attenuated vaccines: The disease causing organism is weakened so it will not cause a full blown disease. This is given to
healthy individuals who can build antibodies against the organism in order to avoid getting the disease. MG patients should not
receive this type of vaccine.
2. Inactivated vaccines: The disease causing organism is killed, and the body makes antibodies against it.
3. Extracts of or detoxified toxins: A toxin which can cause the disease is inactivated before it is given to the patient. An example is
the tetanus vaccine. Individuals with MG may receive an inactivated vaccine, but not a live attenuated vaccine. It is recommended
to receive a yearly flu vaccine. The pneumonia and tetanus vaccines are also recommended when appropriate. Always check with
your physician before receiving any vaccinations and report any previous allergies to vaccines.
For more information about vaccinations refer to the following websites: http://www.cdc.gov/vaccines/vac-gen/howvpd.htm
http://www.myasthenia.org
References:
cdc.gov/vaccines/vpd-vac/should-not vacc.htm
Myasthenia Gravis a Manual for the Health Care Provider. James F. Howard., M.D., editor, 2009.
Page 6
The Oklahoma Chapter of the Myasthenia Gravis Foundation of America, Inc.
Patient and Prescription Assistance
BenefitsCheckUp - NCOA's Online Screening Service
http://www.benefitscheckup.org
BenefitsCheckUp helps thousands of people every day to connect to government programs that can help them pay for prescription drugs, health care, utilities and other needs. It quickly gives a personal report, 20-30 minutes, of public programs and benefits that a patient may qualify for after filling out a questionnaire.
Partnership for Prescription Assistance 1-888-477-2669, https://www.pparx.org/Intro.php
The Partnership for Prescription Assistance brings together America's pharmaceutical companies, doctors, other health care providers, patient advocacy organizations and community groups to help qualifying patients who lack prescription coverage get the
medicines they need through the public or private program that's right for them. Many will get medications free or nearly free.
Valeant Patient Assistance Program (administered through Rx Hope)
1-800-511-2120, www.rxhope.com
Patients can receive certain medications manufactured by Valeant Pharmaceuticals, International, including Mestinon® Timespan (time release pyridostigmine), Mestinon® Syrup (pyridostigmine syrup) and Prostigmin® (neostigmine) if they do not
qualify for Medicaid or other programs. 60mg Mestinon is not included as part of this program.
Novartis Patient Assistant Program
1-800-277-2254
Novartis offers medications to people who meet certain income requirements. Novartis manufactures Sandimmune®
(cyclosporine) and Neoral® (cyclosporine). A medical professional must call this program to request the application. The patient
and the patient's doctor must sign the application form.
Roche Pharmaceuticals 1-800-772-5790
Roche Pharmaceuticals operates the CellCept® Medical Needs Program. A doctor must request and complete the application on
behalf of the patient.
Sanofi-Synthelabo
1-800-446-6267
The Needy Patient Program offered by this company provides Mytelase® (ambenonium chloride) to patients who meet certain
income requirements. A doctor's office or other professional must request the application and complete the forms on behalf of
the patient.
RxAssist - Accessing Pharmaceutical Patient Assistance Programs http://www.rxassist.org/default.cfm
RxAssist provides physicians and other healthcare providers with the information needed to access the pharmaceutical companies' patient assistance programs. Links listed under the headline Other Resources contain information pertaining to medical
assistance cards and prescription assistance programs available in individual states.
UneedPSI
1-800-366-7741, http://www.uneedpsi.org
PSI specializes in health insurance premium, pharmacy co-payment and co-payment waiver assistance. They offer three patient
assistance programs: premium assistance, co-payment assistance and financial hardship waiver.
Needy Meds
http://www.needymeds.com
This site is designed to provide information about patient assistance programs which provide no-cost prescription medications to
eligible participants. If you click on the program list link on the left-hand side, it will display about 318 programs. This list can
be broken down by state, local, fee-for-service, or drug discount cards.
Cost Containment Research Institute
http://www.institute-dc.org
This site advertises the revised 7th edition Free and Low Cost Prescription Drugs, which includes over 100 programs and 1,100
drug listings. Download a free copy of this document on the Web site.
The Oklahoma Chapter of the Myasthenia Gravis Foundation of America, Inc.
Page 7
Moving MG Research Forward
Henry J. Kaminski, M.D. Chairman, Department of Neurology & Psychiatry, Saint Louis University,
Chair, Medical/Scientific Advisory Board, MGFA
The Myasthenia Gravis Foundation of America (MGFA) works toward reshaping scarce research funds to
make every dollar count and, to that end, the MGFA Board and its Medical/Scientific Advisory Board (M/
SAB) is crafting a strategic plan for research development. This is a work in progress, though, at this time we
can provide some insights. Ultimately, we have designed the research strategy to find a cure for MG, but it is
clear that goal is years away.
The executive committee of the M/SAB performed an analysis of the present state of MG research, which
was presented at last year‟s annual MGFA meeting in Milwaukee. It became clear that to do this right, the
MG scientific community needed to get together and develop a data driven research agenda. This is similar
to what the National Institutes of Health did for muscular dystrophy, organizing the leaders in the field to
develop focused work products, then hosting a conference to discuss developments and putting together a
robust document on what is important, what needs to be done and how to get there. To accomplish our goals,
we must have a concentrated amount of effort and time by numerous busy scientists and health care providers. It is not something that the executive committee could or should do alone. So the MGFA is working on
ways to fund a Research Summit to produce a rigorous plan to optimize research funds. However, the
MGFA appreciates research support must go on and has done so in two ways.
The MGFA and the M/SAB realize that the research strategy will require a means to train the next generation
of scientists. For decades MGFA has sponsored training fellowships for young scientists. Now MGFA, with
Rick Barohn‟s leadership (past Chair of the Medical Scientific Advisory Board), has entered into a partnership with the American Academy of Neurology (AAN) to leverage support for the fellowships. The AAN is
the world‟s largest professional society dedicated to advancement of neurology. The new MGFA-AAN fellowship will be advertised across the country in a manner impossible for the MGFA to have done alone. We
therefore expect candidates of even higher caliber applying in the future. Further, our fellows will be provided greater resources and funds and will be targeted to junior scientists just beginning their academic appointments. Support at this time is likely to launch a career dedicated to MG studies (as it did mine). Given
the NIH budget decline throughout the last 8 years and many universities strapped for funds, we must assist
in supporting the next generation of scientists who will discover a career.
Dr. Dan Drachman submitted a proposal to perform a genome wide association study of MG to the research
committee. This study looks at the potential genetic causes that may be associated with the development of
MG. These types of studies have been very successful in identifying genes involved in other diseases. The
research committee needed greater expertise to evaluate the proposal and sent the proposal to three experts in
the genetic field. Ultimately, as these studies are very costly, a revised proposal was recommend for funding.
The MGFA will provide funding contingent on Dr. Drachman obtaining funds from two other sources.
Free Subscriptions to Neurology Now
For a free subscription to Neurology Now magazine, which is an informative magazine about numerous diseases for patients and
families, go to www.neurologynow.com and sign up for a free subscription.
Page 8
The Oklahoma Chapter of the Myasthenia Gravis Foundation of America, Inc.
Intravenous immunoglobulin is better option
for many myasthenia gravis patients
Sources: Reuters Health and Muscular Dystrophy Campaign
http://www.thedoctorschannel.com/video/3948.html?speciality=www.muscular-dystrophy.org
In the biggest study of its kind, US researchers have compared plasma exchange (PLEX) and intravenous immunoglobulin treatments (IVIg) for myasthenia gravis. Intravenous immunoglobulin (IVIg) offers some advantages over
plasma exchange (PLEX) for many patients with myasthenia gravis, according to a report online in the November 8th
Annals of Neurology.
Without a strong evidence base, clinicians must choose myasthenia gravis treatments largely on the basis of expert recommendations and personal experience.
Dr. Amer Alshekhlee from St. Louis University, St. Louis, Missouri and colleagues examined the medical records of
over 1,600 myasthenia gravis patients who received either plasma exchange or IVIg therapy in 1,000 hospitals in the
USA between 2000 and 2005. It is important to note they compared clinical and economic outcomes among patients
hospitalized with myasthenia gravis. These were patients with severe, life threatening symptoms or who were in crisis.
They found that plasma exchange and IVIg therapy were equally effective at saving the lives of myasthenia patients
having a severe relapse. For patients in crisis, IVIg was more effective. The two treatments also had similar rates of
complications. However, the authors suggested IVIg might be better tolerated by some patients, especially the elderly
and those with serious health problems. IVIg also appeared to be a less expensive treatment with shorter hospital stays.
After adjustment for all significant factors, mortality rates and complication rates did not differ significantly between
PLEX and IVIg, but treatment with IVIg continued to be associated with shorter length of stay and lower hospital
charges.
“The analysis offers insight into real-world outcomes of treatments for a rare disease,” the researchers said. “However,
the results should be interpreted with caution as the dataset lacks information on the clinical characteristics for patients
in the study.”
Comment from Sally A. Campbell-Lee, M.D. Associate Professor, Department of Pathology Director, Transfusion
Medicine University of Illinois at Chicago:
“Plasmapheresis, also referred to as apheresis or plasma exchange, is used as a first line therapy in conjunction with
immune suppressants (such as steroids) and cholinesterase inhibition (Mestinon) to treat myasthenia gravis patients.
Apheresis has been effective because it removes circulating antibodies to the acetylcholine receptor which are what
cause myasthenia. Removal of these antibodies, which are produced by the immune system, combined with medication
which helps reduce further production of these antibodies, can help myasthenia patients. Apheresis is generally used
during myasthenia crisis or around the time of thymectomy surgery. It is also used to help maintain optimal strength
for some patients, but there is less data in the medical literature on such usage.”
AMPS: MGF of Illinois - Conquer, March, 2011
This publication is intended to provide the reader with general information to be used solely for educational purposes. As such, it does not address individual patient needs, and should not be
used as a basis for decision making concerning diagnosis, care, or treatment of any condition. Instead, such decisions should be based upon the advise of a physician or health care professional who is directly familiar with the patient. The information contained in this publication reflects the views of the authors, but not necessarily those of the Myasthenia Gravis Foundation
of America (MGFA) and the Oklahoma Chapter of the Myasthenia Gravis Foundation of America, Inc.. Any reference to a particula r product, source, or use does not constitute an endorsement. MGFA, its agents, employees, Directors, chapters, its Medical/Scientific Advisory Board, and its Nurses Advisory Board or their members make no warranty concerning the information contained in this publication. They specifically disclaim any warranty of merchantability, fitness for any particular purpose, or reliability regarding the information contained herein, and
assume no responsibility for any damage or liability resulting from the use of such information.
The Oklahoma Chapter of the Myasthenia Gravis Foundation of America, Inc.
Page 9
Take Control of your future with
these planned giving options
If you are 70 ½, the federal government allows direct distributions from your IRA to charity. You are allowed to rollover
up to $100,000 without increasing your taxable income or paying additional tax.
What are the benefits for you to give this extended tax program? That depends on your current tax circumstance.
An easy way to give: If your IRA has grown over the years, yet the current income meets your financial needs and you
are required to take your minimum distribution, making a gift from your IRA to your favorite charity will not increase your taxable
income.*
Generous IRA giving: If you have already made cash gifts to your favorite charities and are approaching the federal
limit, you can still give more through an IRA rollover gift. Maybe you desire to give more to your favorite charity because they are
involved in a special project, but do not want to exceed the federal limit. Giving through your IRA allows you to give without exceeding the Federal limit and without increasing your taxes*.
Major giving through your IRA: For some people, an IRA may be one of the largest assets in their estate. You may be
involved with a charity that is in a building or special project program, and you may be concerned about making a major gift
through income or other assets. Making a gift, of up to $100,000, from your IRA will help your favorite charity, as well as reduce
your taxable income*.
* This is not intended as legal, tax or accounting advice. For tax advice, please consult you financial professional.
My Imaginary Illness—A Journey into Uncertainty
and Prejudice in Medical Diagnosis
by Chloe G.K. Atkins
When she was 21, Chloe Atkins began displaying symptoms of a mysterious illness. Certain
treatments were tried and when none worked, she was told her illness was psychosomatic. This book is
about a 10 year journey of emotional and physical patient mismanagement prior to her diagnosis of
Myasthenia Gravis. Dr Atkins investigates how the medical establishment applies psychological stereotypes to illnesses it is yet unable to explain. I highly recommend this book for MG patients and health
professionals, especially medical students and resident doctors and nurses. It is extremely well written
with many insights into Myasthenia Gravis.
*You may also listen to Chloe‟s interview on CBC‟s The Current: http://www.cbc.ca/
thecurrent/2010/10/05/oct-0510---pt-3-chloe-atkins/
AMPS: MG Ontario Newsletter, May 2011
Source: MGABC
MG is best described as the “snowflake disease”
because its symptoms manifest differently in each patient.
Page 10
The Oklahoma Chapter of the Myasthenia Gravis Foundation of America, Inc.
DONATIONS – HONORARIUMS – MEMORIALS
The following are the names of those who have
paid their Chapter memberships or have made
contributions to the Chapter from April 6 - July 11,
2011.
In Honor of Kay Northcutt
Francis E. Oney
Gerry Wolf
In Honor of William Fitts
Alice M. Fitts
Foundation Grants
Anne & Henry Zarrow Foundation
Donations & Dues
E.H. & Joan Bowen
Kathryn E. Dick
Joe & Karen Worlick
Roger Driggers
Bruce Wilson
Mark Swift
Jack Savage
Morgan Browning
Leon Seaton
Sylvia Benda
JT Dooley
Ed Rice
Carl Bartenhagen
Bill & JoAnn Derrick
Ida & Kenneth Ramsey
Blackie Gibson
Kenneth & Winifred Kimmell
Ray & Doris Vanscoy
Albertine Currier
Kay Northcutt
If a family member or friend has died of MG, you may, in lieu of flowers, request a donation
to the Oklahoma MG Chapter. Please specify in the death notice that donations should be made to
our Chapter. You may also request a supply of memorial and honorarium envelopes to have on
hand at the funeral home.
May no myasthenic ever feel
alone in their disease.
The OKMGF is an avenue
for thoughtful and
commemorative giving.
Gifts honoring
distinctive occasions
and special persons
provide financial
assistance to the
Chapter as well as give
the donor and the
receiver a sense of
permanent involvement.
Moneys received through
the Chapter are used to
fund patient services,
and public awareness
programs. A great way
to remember a family
member’s or a friend’s
birthday,
graduation, anniversary,
or memory is with a
donation to the OKMGF.
Our chapter will send
them an OKMGF
Birthday, Honor or
Memorial card to let
them know that you
care.
Please make checks out
to OKMGF or
Oklahoma MGFA
All contributions are tax
deductable.
Contact Information
Hovak is published quarterly by the Oklahoma Chapter of the
Myasthenia Gravis Foundation of America, Inc., 6465 S Yale
Ave., Suite 623, Tulsa, OK 74136, Editor: Peggy Foust
Tele #: 918-494-4951, fax: 918-494-4951
OKMGF Board Members
Jeanmarie Carper, DeAnna Cooper, Ed. D., Jennifer
Morris, Kay Northcutt, D. Min,. Leon Seaton, RN/
Pastor & Carolyn Staubach, RN
email: [email protected]
webpage: http://www.myasthenia.org/chapters/Oklahoma/
The OKMGF Chapter office is open: Monday & Friday - 11:00
a.m. - 4:00 p.m., Wednesday 9:00 a.m.- 4:00 p.m.
Office Staff: - Executive Director /President - Peggy Foust,
Vice President /Treasurer/Secretary - Margret Feller
Myasthenia Gravis Foundation of America, Inc.
355 Lexington Ave, 15th Floor, NY, NY 10017-6603
1-800-541-5454 1-212-297-2156
Monday – Friday 8:00 a.m. – 5:00 p.m. [email protected]
webpage: http:www.myasthenia.org
The Oklahoma Chapter of the Myasthenia Gravis Foundation of America, Inc.
Page 11
The Oklahoma Chapter
of the Myasthenia Gravis
Foundation of America, Inc.
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―The Disease Nobody Knows‖
MYASTHENIA GRAVIS
It can strike anyone at any age. MG is a highly misdiagnosed autoimmune disease in which communication
between nerve and muscle is impaired, causing weakness. Its primary symptoms are erratic. The most common symptoms, alone or in any combination are : droopy eye lid(s), weak arms, hands, neck, face or legs,
difficult chewing, smiling, swallowing, talking, or breathing or shallow respiration, blurred or double vision, sense of balance difficulty or undue fatigue. MG can masquerade as over work, under-rest, anemia,
vitamin deficiency, disease of the involved organ(s), or even emotional disturbances.
MG‟s cause is unknown. There is no cure. As a result of research financed by the Myasthenia Gravis Foundation, diagnosis and treatment procedures have markedly improved. The MGFA, a charitable non-profit
organization, was formed to serve patient needs, promote public awareness and provide for research. The
Oklahoma Chapter of the Myasthenia Gravis Foundation of America, Inc. is the only organization in the
state of Oklahoma that works exclusively for Myasthenics.
Uniting for a Cure —Together we are Stronger