Please help me raise funds for the Myasthenia Gravis Foundation of America!
Thank you for visiting this page and reading a story I have been hesitant to share over the past few months. I hope it inspires you to contribute to a cause which has come to mean a lot to me.
Following my second bout of COVID during the summer of 2020, I started experiencing a weird constellation of lingering symptoms, eg. back and neck pain, a rash on my ankles, some fatigue. Nothing was serious or consistent, so I wasn't immediately concerned. But then in early November I suddenly started experiencing "bulbar symptoms” – difficulty swallowing, weak jaw and facial muscles, progressive loss of speech, and weakening of the tongue. That got my attention.
As luck would have it, I had just been diagnosed with Lyme disease a few days before, and my doctor said that untreated Lyme could cause the bulbar stuff. So I assumed all would be resolved once I got through a big bag of antibiotics.
Unfortunately, the drugs didn’t do the trick, and an MRI of my brain confirmed Lyme wasn’t causing the facial weaknesses. So off to a neurologist I went, and he confirmed that I have a rare condition called Myasthenia Gravis (MG). MG is both an autoimmune and neuromuscular disorder, meaning my body attacks itself, affecting the communication between my nerves and muscles. Available treatments can control symptoms and usually allow people with MG to have a relatively high quality of life with normal life expectancy.
I had never even heard of MG at the point of my diagnosis, and my experience has shown me that you probably didn't know about it until now either. Crazy, right?
Fast forward a few more weeks and tests, I now know that the reason I have MG is almost certainly due to a very small tumor on my thymus, called a thymoma. (As a reminder for us non-doctors: the thymus is a gland in your chest, not to be confused with the thyroid in the throat or hypothalamus in the brain.) So while it’s possible that the COVID + Lyme double whammy inflammation in my system kickstarted my MG, the tumor and my genetic programming would have done it eventually anyway…and better to know now while I’m younger and the tumor is smaller.
Managing my MG symptoms currently requires a daily regimen of immune system suppressing steroids, plus another medication that prevents the breakdown of the neuromuscular chemical that my immune system is attacking. But the best chance I had for significantly reducing (or even potentially eliminating) my long-term dependency on medication would be to remove my thymus entirely.
So that's what I did.
On May 3rd, Dr. Joshua Sonett and his remarkable thoracic surgery team at Columbia University/New York Presbyterian Hospital here in NYC performed a thymectomy on yours truly. Thanks to the miracle of modern medicine, it took only two hours and four small incisions in my chest. I was discharged the next morning and wrote this story from the comfort of my home only one day later. It could take a few months or even years for me to know just how low I can go in terms of daily medications, but I am incredibly optimistic and thankful to be on this side of the surgery.
Which brings me to the reason I decided to share my story.
Throughout this process I have benefited from the resources made available by the Myasthenia Gravis Foundation of America (MGFA), the only national volunteer health agency in the United States dedicated solely to the fight against MG. MGFA is committed to finding a cure for MG and closely related disorders, improving treatment options, and providing information and support through research, education, community programs, and advocacy.
Shortly after being diagnosed, I joined a (currently still Zoom-based) support group of other people living with MG in the NYC area, which has helped me with questions about my medications, the COVID vaccine, managing symptoms, and eventually my surgery including the referral to Dr. Sonett. Through the group sessions I have realized just how fortunate I am in terms of my level of symptoms and speed of diagnosis. Others have it *much* harder than I do, and I want to provide as much support as I can to the researchers studying MG and other neuromuscular disorders.
June is officially MG Awareness Month, and MGFA will be resuming their annual MG Walk events this fall. I plan to participate in the NYC area event on Saturday, September 18th, 2021, and have created this page to start raising funds.
I hope you’ll register to join me or make a pledge to help me reach my goal.
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