Why I’m stepping up my rare disease advocacy today
Waiting or doing nothing simply isn't an option
Most people try to live life as best they can in a chaotic world, but they never have the power to do what they really want to do. As the nondisabled brother of a twin with myasthenia gravis (MG), I feel I need to take my responsibilities as an advocate for rare diseases more seriously. I recently wrote about experiencing survivor’s guilt and publicly acknowledging that my twin is living with disabilities. As a self-declared MG advocate, I’m going to start writing my first letters urging local officials to raise more awareness about rare diseases and the need for more funding for treatments and cures.
Writing for this website has been extremely cathartic for me. It has made me publicly acknowledge how watching my twin struggle with myasthenia gravis has affected me. However, I don’t have MG. Perhaps in some alternate reality I do, but in this one, my twin brother, Aaron, has it. I feel like I have a responsibility to do something more.
Grains of sand that multiply
I don’t have the political power to affect public sentiment about rare diseases or persuade government authorities to allot more funding for scientific research, but that doesn’t mean I shouldn’t try.
Writing a letter to my local elected official demanding more public advocacy, awareness, and funding won’t prompt instant change. But big things happen in small and incremental ways.
I was recently chatting with my twin online about his exercise routine when it hit me that he probably can’t exercise the way he wants to. Before Aaron was diagnosed with MG, he was an exercise fanatic.
He runs errands often but can’t exercise every day like he used to. Myasthenia gravis causes intense and recurring bouts of muscle weakness in the limbs, throat, and eye muscles. The disease and its symptoms are amplified by stress and anger.
While research suggests that exercise doesn’t necessarily worsen MG, it’s a moot and dangerous point when muscle weakness symptoms occur. Intense exercise is something Aaron loved doing regularly. Now, it’s something he just can’t do on his own terms anymore.
This conversation made me realize how much depression Aaron must be dealing with yet not publicly acknowledging. Some scientific research notes that MG can cause anxiety and depression, which in turn augments the disease, which causes more anxiety and depression.
I haven’t seen Aaron angry in decades, so I know he understands the consequences of giving in to anger. Yet, I never fully appreciated how depressed he might be due to the disease — even though being depressed could worsen his condition. (I know this disease stabs his soul, but he’s the most optimistic person I know, perhaps out of necessity.)
Like many Americans, I too suffer from depression. But I don’t have myasthenia gravis. There is so much I can do to improve my body and my health that my twin can’t do and never will. Writing about how messed up that is will not always be enough to cope with the outsized unfairness of the situation.
I don’t pretend that I’ll get the president on the phone. But maybe things will change for the better in terms of new research decades from now.
I don’t know if medical advances in myasthenia gravis research will happen in our lifetime, but if people who have this disease a century from now can enjoy the benefits of medical research happening now, then so be it.
As an average person, building the power to affect real change can take a long time. It’s my responsibility to do something, no matter how small, as the relative of someone suffering from this disease.
Note: Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.
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