Finding a viable treatment option for a rare disease can be a long-term, frustrating struggle. Being rare, the disease itself is often poorly understood by the medical community, making it even more difficult to treat.
Myasthenia gravis is an autoimmune disease, which means the immune system attacks healthy tissue — in this case, the neuromuscular junction where nerves and muscles are supposed to communicate. The exact mechanisms affected in and around the neuromuscular junction aren’t yet defined for all types of myasthenia gravis. This makes treating the specific area of fault difficult. Instead, doctors prescribe immunosuppressive drugs. These drugs weaken the entire immune system, not just the affected part, to suppress the attacks on healthy tissue.
These medications can take several months to reach effectivity, and there are numerous types of them, which means finding the right treatment for a specific case may take longer than expected. In my case, it was almost five years of trial and error.
It was a glorious feeling when, after five years of disappointment, I was finally told, “It seems to be working. Your muscle strength is improving.” It was extra amazing when I felt the medicine finally doing its job. For me, that meant being able to walk more than 500 meters without being out of breath and muscle strength. After more than a year on cyclosporine, I finally can attempt exercise again. Patience is key.
However, many side effects accompany immunosuppression. The function of the immune system is to protect the body’s health. That makes autoimmune diseases quite ironic — the immune system is too active, which damages your body’s health. So, when the immunosuppressive drugs work, it means the immune system works less, so you are less protected from disease. That often results in colds and flu or any other infection — all of which can aggravate myasthenia gravis. It is a Catch-22 situation.
As most children did, I had chicken pox when I was 5 or 6 years old. I did not know that that virus stays in your system after the disease is gone. At 25 I had shingles, which is when the chickenpox virus reactivates in adulthood. Why did it reactivate? Because my immune system is suppressed.
Whenever I fly on a plane, I need to wear my Vogmask to ensure the recycled air on the plane does not infect me with the germs other passengers might carry. I have elected not to fly with my protective mask before due to embarrassment and stares from others, and without fail, I would end up sick.
It seems that most things related to chronic illness are a Catch-22. Do I go for dinner with friends tonight? If I do, I will need lots of extra rest to recover and resume my daily activities, and if I don’t, I will feel alienated again. Do I take my immunosuppressive medicine? If I do, I have to fight off common infections daily with pre-emptive measures such as masks and the avoidance of sick people. If I don’t, I won’t feel any stronger any time soon.
As with most things, I have decided on doing what works best for me. I have learned and grown a lot. I no longer avoid wearing my mask and am no longer affected too deeply by the stares. I never ponder whether I should take my immunosuppressive drugs. I take them every 12 hours and my muscles feel stronger for it, which is what is important for me. Nothing about life with myasthenia gravis is ever simple, but life is always worth it. Never stop fighting, life is beautiful.
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