My Snowflake Story: Myasthenia Gravis 101
How Snowflakes are formedMyasthenia Gravis (MG) is a chronic autoimmune neurological disease. (1) What a mouthful!
It has a world prevalence of between 25 and 142 per million (2) indicating that those affected, especially in South Africa, are few and far apart.
MG is often called the snowflake disease due to the fluctuating symptoms experienced from one person to another.
Each snowflake has a similar primary ice crystal base, but the internal order of the primary crystal, and exposure to different atmospheric conditions during the formation of its crystal arms results in its unique appearance. (3)
Similarly, MG is normally identified by muscle fatigue and weakness; this would be the primary crystal (1) . Each individual's genetic make-up, the internal order of the crystal, and their unique environmental and lifestyle stressors, the atmospheric conditions, results in each MG warrior's unique set of symptoms.
After what seemed like a year of undiagnosed symptoms and a batch of tests, I was finally diagnosed in 2007, two weeks before writing my final OT exams.
My muscle weakness resulted in dropping eyelids, trouble chewing and poor endurance when doing what should be simple tasks such as brushing my teeth or climbing stairs. I noticed that my smile had disappeared. What a strange thing for a normally happy go lucky girl! It was replaced by what I call 'The Snarl'. Ever since December 2006, I have avoided photos because I'm self-conscious about my appearance.
During my final year of OT, I battled on and off with severe fatigue. This was dismissed by people who assumed that I was pushing myself too hard and just not coping with the stress of my final year. My breaking point came when I started to struggle to speak. At this time, I was actually working as a student in Groote Schuur neurology ward. My OT lecturers confronted me after my exam and said that they felt I had an anxiety disorder. In my whole OT training we received approximately 10 minutes worth of lecture-time on MG and so even I was, at this stage, oblivious to the looming snow storm to come.
Frustrated, I phoned my mom and asked her to book me an emergency appointment with our GP. I left and drove home with my head tilted back to try to keep my eyelids open. My GP finally listened to my all of my symptoms and immediately referred me to a Neurologist.
After half an hour with the Neurologist and one day in ICU for a neostrym test, I was diagnosed. What a relief! Little did I know that this was only the beginning.
I have been on immunosuppressive drugs, cortisone and symptomatic therapies. I've IVIG, plasma exchange and a thymectomy. Hair loss, strange hair growth, stomach ulcers, shakes, blurred vision, cotton mouth, weight gain, diarrhoea, nausea and mood changes are just a few of the side effects from the meds.
With therapy and support, I am able to live a blessed, functional life. However, I do have my flares and bad days. Last year (2015) I was off on sick leave for 20 days, 15 of which were spent in hospital.
I am tired of hearing advice from professionals. They mean well but have no personal experience. That is why I want to share my personal journey with you.
I'm currently on a strict eating plan, have a set exercise plan and I'm working with a Physiotherapist, Chiropractor, Homeopath and Occupational therapist to help me get the most out of my days.
Also, I promise to only write short posts, with relevant research and personal experience!
If you want to connect with the MG South Africa Support group, please visit: www./myastheniagravis.co.za
The group was created by MG warriors to allow support, spread awareness and allow easy access to information about MG. It also links to a Facebook group where members can give and share advice about their battle.
3. National Oceanic and Atmospheric Association: How do snowflakes form. http://www.noaa.gov/features/02_monitoring/snowflakes.html