A myasthenia gravis diagnosis is life-changing for many, but an MG diagnosis as a child can change the entire trajectory of your life.
When I look back at the time of my diagnosis, I think about how different my formative years could and would have been if I hadn’t had MG. Growing up with myasthenia is the furthest thing from normal, and what makes it feel even more abnormal is that typically no one around you is experiencing the same thing. It’s not a common condition like asthma or diabetes in children; this disease is particularly rare and to live with a disorder such as MG during your adolescence requires you to grow up much quicker than you anticipated.
According to the Myasthenia Gravis Foundation of America, there are three types of myasthenia that occur in children: transient neonatal myasthenia, congenital myasthenic syndromes, and juvenile myasthenia gravis. Below are brief descriptions of each.
Transient neonatal myasthenia
Transient neonatal myasthenia occurs when infants born to mothers with autoimmune MG develop generalized weakness at birth. Symptoms typically disappear within a few weeks and there is not an increased risk for these infants to have long-term or future MG.
Congenital myasthenia syndromes (CMS)
CMS is a group of uncommon, hereditary disorders of the neuromuscular junction. There are various types as a result of a genetic mutation and specific protein component of the NMJ.
Juvenile myasthenia gravis (JMG)
JMG is an autoimmune disorder that causes muscle weakness. Symptoms tend to worsen after exertion and as the day progresses.
Allison Foss, the Executive Director of the MGA, and myself were both diagnosed with MG as children (she was 5 and I was 13). Needless to say, our upbringings were unconventional.
Instead of deciding whether I felt like going to a friends’ house, I was given no choice but to make doctor appointments or napping my first priority. When this becomes your norm your perspective on life changes, and the things you once thought were important seem trivial. As a child, you should be thinking about friends, sports, hobbies, school; my childhood was spent remembering when to take my next pill.
Although our journeys to diagnosis were different, both Allison and I have the unique shared experience of being diagnosed at such a young age. Allison recently stumbled upon some journal entries she wrote for school and for a child, the accounts are pretty profound. Titled, “Any Gift in the World,” she states in her work, “to make my disease go away.” As simple as the statement may be, it is impactful. It shows the heavy burden this disease can weigh on an individual. I call that a type of unparalleled strength that no kid should carry.
Is there any good that can come out of living with a rare disease such as myasthenia as a young kid? For me (and I think I can speak for Allison), there can be. Because of our myasthenia, we have dedicated our lives to helping others that have or are going through similar experiences. Sometimes living with myasthenia can be lonely, but it can also be empowering.
Pictured here is Executive Director of the MGA, Allison Foss, and St. Louis Program Coordinator, Meridith O'Connor, at the old office of SLU's neurology department. The two had just confirmed their partnership with the neurology team at Saint Louis University Hospital!
The following blog post was written by Meridith O'Connor, St. Louis Program Coordinator for the Myasthenia Gravis Association. #MyastheniaGravisAssociation #MGADigest #myastheniagravis