| Myasthenia Gravis Association of Kansas City |
|
Patient Stories
| Myasthenia Gravis Association Address: 6700 Troost, Suite 502, Kansas City, MO 64131 Phone: (816) 256-4100 ~ Fax: (816) 333-1402 Email: mgakc@sbcglobal.net Privacy Policy |
| If you would like to submit your own story, please contact the MGA office at (816) 256-4100 or mgakc@sbcglobal.net |
| Click here to view an in-depth organizational profile and make a credit card donation on a safe, secure site |
Donna Whittaker's MG Story
as told to Amy Ehlers, MGA Program Coordinator
Donna Whittaker was diagnosed with myasthenia gravis
when she was only 10 years old. Her parents took her to
a leading pediatrician in St. Joseph, MO – he thought she
was undernourished. They went for a second visit; this
time after Donna had been at school and was worn out
from the day. The doctor put her in the hospital and,
after performing some tests, diagnosed Donna with MG.
Donna’s parents were accepting of her disease and were very supportive, encouraging
her to do whatever she wanted. She went into remission at 13 years old and stayed that
way for 12 years. Donna started having symptoms when she was 25, and was very
frustrated as her problems were primarily with speech and she was teaching language
arts and speech. It took her four years to get re-diagnosed with myasthenia gravis!
After finally being re-diagnosed, Donna was put on Prostigmin but soon after found out
she was pregnant. Three months after giving birth to her daughter, Amy, she once again
started having stronger symptoms, and was put on Mestinon and Ephedrin which
regulated her MG for 15 years. During that time, Donna ran a business out of her home,
got her master’s degree, was certified to teach remedial reading, and taught remedial
reading, language arts, speech, and drama, not to mention dealing with her husband
serving in Desert Storm! Donna’s family has been very supportive of her dealing with
MG; it is “normal” for them. Her remission had ended right after she was married, and
her daughter has never known anything different. The most frustrating thing to Donna
and her family is the financial anxiety and drain that the MG creates.
Donna’s MG flared up again after having dental problems (complicated by the death of
her dentist in a car accident). She ended up in the ICU, and literally had to be tied down
so the doctors could start her on prednisone – Donna had a family history of diabetes
and was sure she would get it too. The prednisone did help her improve, but she
unfortunately had also been right about the diabetes. Donna ended up with steroid
myopathy and couldn’t move her legs, and after switching to another neurologist she was
started on plasmapheresis with no results, and then tried IVIg which enabled her to move
her legs within 30 minutes.
In 1995 Donna started on Imuran, and was finally able to get off prednisone on Mother’s
Day in 1998. Her diabetes is now gone. Today Donna is on Imuran, Mestinon, and
Ephedrin and is beginning to decrease her Imuran dosage. She still has her thymus and
sees no need to remove it at this point, unless she ever has heart surgery!
Donna has done a lot over the years to help support others with MG. She knows how
lonely and hard it can be for those who don’t know anyone else with MG, and has dealt
with those who don’t understand MG (such as her sorority that couldn’t understand why
Donna wasn’t able to plan 1 ½ years ahead for meetings!). She began going online and
hosting chats when having speech problems. Donna joined forces with Stan Way in
Maryland, who had put together an online MG Bulletin Board and a ListServ for
myasthenics. At the 1998 MGFA Annual Meeting they started MGNet, the official
Internet Chapter of the MGFA, and the first Internet chapter of any medical
organization as far as they know. MGNet has greatly helped those who don’t have a
local chapter or are unable to attend meetings, connecting them to others who may live
in another state or across the world but share the same experiences with MG. In
addition to her work with MGNet, Donna also leads the MGA’s St. Joseph Support
Group and faithfully attends MGA events.
Today Donna is doing well and keeping very busy. She is a wife and mother, an online
GED instructor, helps people improve reading skills, has an eBay store, is involved in a
car club and travels with them, plus her work with MGNet and the St. Joseph support
group! After 50 years of MG this past September, Donna has had basically all the
symptoms that can be had and is thankful to survive this long and be in good health. In
fact, Donna believes that her life has been fuller and richer because of MG. She has met
people all over the world and has been an entrepreneur in MGNet and her eBay
business, and overall has had more good times than bad throughout her journey with MG.
To those who are newly diagnosed, Donna recommends going to a doctor who knows a
lot about MG and treats many MG patients. She also says to monitor your medications
and keep a log of symptoms to take to your doctor’s visits. For those without MG,
Donna asks that you be aware that MG is very unpredictable – just because an MGer
can’t do something one hour doesn’t mean they can’t the next. Also, she says to be
patient – for example, if a husband doesn’t understand why his wife with MG can’t do
much, he may say she’s lazy, so the wife will exhaust herself and hit bottom with her MG
by trying to do it all. The wife needs to learn to slow down; the husband needs to be
patient and understanding.
Donna is like the “Little Engine That Could” – she keeps on plugging up the hill. She says
if you keep doing as much as you are able, you can reach your goals. Stop and rest when
you need to, take care of yourself when you need to, and keep going when you are able.
as told to Amy Ehlers, MGA Program Coordinator
Donna Whittaker was diagnosed with myasthenia gravis
when she was only 10 years old. Her parents took her to
a leading pediatrician in St. Joseph, MO – he thought she
was undernourished. They went for a second visit; this
time after Donna had been at school and was worn out
from the day. The doctor put her in the hospital and,
after performing some tests, diagnosed Donna with MG.
Donna’s parents were accepting of her disease and were very supportive, encouraging
her to do whatever she wanted. She went into remission at 13 years old and stayed that
way for 12 years. Donna started having symptoms when she was 25, and was very
frustrated as her problems were primarily with speech and she was teaching language
arts and speech. It took her four years to get re-diagnosed with myasthenia gravis!
After finally being re-diagnosed, Donna was put on Prostigmin but soon after found out
she was pregnant. Three months after giving birth to her daughter, Amy, she once again
started having stronger symptoms, and was put on Mestinon and Ephedrin which
regulated her MG for 15 years. During that time, Donna ran a business out of her home,
got her master’s degree, was certified to teach remedial reading, and taught remedial
reading, language arts, speech, and drama, not to mention dealing with her husband
serving in Desert Storm! Donna’s family has been very supportive of her dealing with
MG; it is “normal” for them. Her remission had ended right after she was married, and
her daughter has never known anything different. The most frustrating thing to Donna
and her family is the financial anxiety and drain that the MG creates.
Donna’s MG flared up again after having dental problems (complicated by the death of
her dentist in a car accident). She ended up in the ICU, and literally had to be tied down
so the doctors could start her on prednisone – Donna had a family history of diabetes
and was sure she would get it too. The prednisone did help her improve, but she
unfortunately had also been right about the diabetes. Donna ended up with steroid
myopathy and couldn’t move her legs, and after switching to another neurologist she was
started on plasmapheresis with no results, and then tried IVIg which enabled her to move
her legs within 30 minutes.
In 1995 Donna started on Imuran, and was finally able to get off prednisone on Mother’s
Day in 1998. Her diabetes is now gone. Today Donna is on Imuran, Mestinon, and
Ephedrin and is beginning to decrease her Imuran dosage. She still has her thymus and
sees no need to remove it at this point, unless she ever has heart surgery!
Donna has done a lot over the years to help support others with MG. She knows how
lonely and hard it can be for those who don’t know anyone else with MG, and has dealt
with those who don’t understand MG (such as her sorority that couldn’t understand why
Donna wasn’t able to plan 1 ½ years ahead for meetings!). She began going online and
hosting chats when having speech problems. Donna joined forces with Stan Way in
Maryland, who had put together an online MG Bulletin Board and a ListServ for
myasthenics. At the 1998 MGFA Annual Meeting they started MGNet, the official
Internet Chapter of the MGFA, and the first Internet chapter of any medical
organization as far as they know. MGNet has greatly helped those who don’t have a
local chapter or are unable to attend meetings, connecting them to others who may live
in another state or across the world but share the same experiences with MG. In
addition to her work with MGNet, Donna also leads the MGA’s St. Joseph Support
Group and faithfully attends MGA events.
Today Donna is doing well and keeping very busy. She is a wife and mother, an online
GED instructor, helps people improve reading skills, has an eBay store, is involved in a
car club and travels with them, plus her work with MGNet and the St. Joseph support
group! After 50 years of MG this past September, Donna has had basically all the
symptoms that can be had and is thankful to survive this long and be in good health. In
fact, Donna believes that her life has been fuller and richer because of MG. She has met
people all over the world and has been an entrepreneur in MGNet and her eBay
business, and overall has had more good times than bad throughout her journey with MG.
To those who are newly diagnosed, Donna recommends going to a doctor who knows a
lot about MG and treats many MG patients. She also says to monitor your medications
and keep a log of symptoms to take to your doctor’s visits. For those without MG,
Donna asks that you be aware that MG is very unpredictable – just because an MGer
can’t do something one hour doesn’t mean they can’t the next. Also, she says to be
patient – for example, if a husband doesn’t understand why his wife with MG can’t do
much, he may say she’s lazy, so the wife will exhaust herself and hit bottom with her MG
by trying to do it all. The wife needs to learn to slow down; the husband needs to be
patient and understanding.
Donna is like the “Little Engine That Could” – she keeps on plugging up the hill. She says
if you keep doing as much as you are able, you can reach your goals. Stop and rest when
you need to, take care of yourself when you need to, and keep going when you are able.
