Author: Donna Whittaker
I was diagnosed as a 10-year-old only child living on a farm near a small Missouri town of 350 people. No one had heard of the condition I had – myasthenia gravis. It wasn’t discussed. My classmates weren’t aware of it. I went to the water fountain to take my medication as they carried on with class.
No one I met had even “heard” of myasthenia gravis until Cheryl, a roommate during my Junior year of college. She had heard of it – only because a doctor had ruled out her having it as a child. It would be another ten years before I met another person with myasthenia gravis.
That is a long time to be the only one with any condition, especially a strange condition with a strange name – myasthenia gravis. These were my adolescent, teen, and twenties when everyone is searching to find social communities where they fit.
Luckily, much of that time I was in symptom-free medication-free remission. I finished high school and college, taught middle school, and married. When I started to have symptoms, it took four years for rediagnosis and medication. Shortly thereafter, my daughter was born, and my body became rag doll weak.
At that point, I went to the Myasthenia Gravis Association – Kansas City clinic at the old Menorah Medical Center. For the first time in 20 years after my original diagnosis, I met others with myasthenia gravis – I was NOT alone.
Soon, thereafter, I met several others at meetings. One was Frankie who was diagnosed by her husband, a neurosurgical resident, while she was in an iron lung in the 1940's. She was an active myasthenia gravis volunteer and poet. In her 80’s she was in remission and dancing. She is my inspiration for living a full life with MG.
All this time, my mother was a one-woman awareness committee in our small rural community. She told everyone she met about myasthenia gravis and how they needed to know about it because it could touch anyone at any age at any time. My mother was talking to a customer on her Rawleigh Products route one day and Jeanne said, “My mother has that.” That family became cherished members of our St. Joseph support group where we moved so my husband would have medical benefits with employment.
Later, the retired undertaker in my hometown went to his ophthalmologist and was advised he possibly had myasthenia gravis. Eldon had “heard” of MG because my mother told everyone in town about it. He called her to find out who my neurologist was. A week later he was officially diagnosed and on medications in record time because he was aware of where to find qualified resources. Eldon is truly a success story because of awareness.
I found the myasthenia gravis internet community in the 1990’s on the old Prodigy dial-up service when I went through another ‘rag doll’ weak period. The online community led by Stanley Way gave me reassurance that I was not alone. The MG expert neurologist, James Howard, MD, shared the medical information that we as patients needed to know. Not only was I not alone, but I had access far beyond the one paragraph on myasthenia gravis found in most references.
This weekend I received an email from a newly diagnosed patient thanking me for the free eBook I edited saying:
“It has calmed me more than anything else yet. It’s great to learn and not be all fearful….. No one I know has heard of this…. It’s difficult because I haven’t had a conversation about it without having to explain what it is – when I barely understand it yet… This book was like having a conversation with someone who actually has this – and not just the scary stuff that I read on Facebook groups, nor the clinical stuff from the neurologist. I needed to ‘hear’ those people so much! .. it looks like this isn’t an absolute death sentence, but something I will figure out how to live and adjust to. Therefore, HOPE4MG living is a name perfect, because that is what you shared with me.”
Also, I recently spoke with a newly diagnosed patient who had never heard of myasthenia gravis. She was having trouble even saying the name of this strange condition. She was chatting with my college friend Janelle who said, “I’ve heard of that. Donna has it.” Hopefully, my phone call assured the new person that we have treatments, we have a great support system through the MGA, and she can have hope for effective treatments. Most importantly she was not alone.
These two are examples are many over 40 years of involvement with the MGA that I have been able to assure that they were not alone. I haven’t wanted anyone else to have twenty or even ten years of not having anyone who understood their situation.
My family and I have always tried to spread awareness of myasthenia gravis and provide families affected with information and hope. That has been my personal goal; to share experiences so others will not be alone with myasthenia gravis but will feel hope for living a rewarding life.
Yes, myasthenia gravis awareness means a lot to me. Not only am I not alone with myasthenia, but I have access to the latest information. I have friends around the world who truly understand me far beyond my small rural hometown. A patient newly diagnosed with this condition with the mysterious name can Google it and find widespread involvement by the medical community and other patients. The newly diagnosed and the MG veterans going through challenging times are not alone.
Thanks to awareness activities such as the Missouri Proclamation proclaiming Myasthenia Gravis Awareness Month, involvement in various online communities, and blogs such as this one, all of us with myasthenia gravis can better understand our conditions. Our friends and families can understand us. Most importantly medical professionals can understand myasthenia gravis better.
With awareness, no one is alone with myasthenia gravis. The following blog post was written by Donna Whittaker, a lifelong reader and writer. From editing the high school yearbook to employment and volunteering endeavors, writing has been her contribution. She has written numerous articles on all aspects of living with myasthenia gravis. She was one of the first myasthenics to share her experiences on a website devoted to living with myasthenia gravis in 1996. Her latest work is an eBook, HOPE For Living a Long Full Life With Myasthenia Gravis, with journeys of friends with myasthenia gravis for 25 years or more to give hope especially to newly diagnosed patients for living a long life with this chronic condition. It is free and available by emailing: HOPE4MGliving@gmail.com
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