Myaesthenia gravis is a neurological condition that affects 20 of every 100,000 people according to the National Library of Medicine . My friend Rachel is one of them, and as June is MG awareness month, I’m happy to welcome her to the My Identity Doctor blog to share her story with us!
Hi Rachel! Thanks for joining us today to share your story. Tell us a bit about yourself!
My name is Rachel! Right now I’m working in research and hope to go to medical school in the future. I have a disease called myasthenia gravis. It’s in remission for now – let’s hope it stays there for a while!
I’m a bit of a bird lady and I have a parrotlet named Sunny who is six years old and has a ridiculously fun personality. Right now I’m training for my first marathon – it’s not until October but I’m slowly increasing my mileage, which I’m really excited about! I love distance running – it’s basically doing exactly the opposite of what I could do when I had active MG symptoms. It’s a good feeling.
As a patient working in research and hopeful future medical student, you’re probably the best person to explain in words we understand… What is myasthenia gravis?
So, MG is an autoimmune disease, where your own immune system mistakenly attacks your own tissues instead of attacking foreign things like bacteria or viruses. In MG specifically, your immune system attacks a receptor in the junction between your muscles and nerves – no receptor, no communication between your nerves and your muscles, so you end up with a lot of weakness. Something different about MG is that it is fatigable, where your muscles get worse the more you use them.
Treatments range from symptom management to suppressing the immune system. Some people have a surgery called a thymectomy, or removal of your thymus gland, which is a part of your immune system. This can help induce remission but isn’t effective for everyone.
Tell us more about your experience with MG… When were you diagnosed, what symptoms did you experience and for how long before diagnosis… what did that journey look like?
I was diagnosed in 2011, right before I turned 19. I went from being completely healthy to having all these strange symptoms over a course of about two months – things like not feeling like I was swallowing properly, having trouble talking without plugging my nose, and not being able to smile. I passed it off for a while because my symptoms would fluctuate – one day they’d be there and the next day they would be gone.
Eventually my symptoms got progressively worse, especially my speech. I finally got checked out in urgent care, who gave me a referral to an ear/nose/throat doctor – but the next day, I couldn’t really move my forehead, so it became apparent that it definitely wasn’t an ear, nose, or throat issue. So back to urgent care I went, and they sent me to the hospital. I was diagnosed that day. The first few months after that were rough – I was in and out of the hospital a few times and was really struggling to manage school. I ended up withdrawing and taking some time off, which was both good and bad. It was hard to feel like I was watching life pass me by, but it helped me get my health in order and really reevaluate my priorities and where I wanted to go from there.
When I think back to my diagnosis and the few months following it, I really just remember how scary it was. At first, you have all these symptoms and there’s the fear that comes with realizing that something is wrong with you – then you get handed this diagnosis and you don’t really know what the future is going to look like for you. It’s a big adjustment.
What do you think are the most important thing to know about myasthenia gravis?
I think it’s really important to know that everyone’s experiences are really different with MG – I’ve heard it referred to as the “snowflake disease” because no two people’s experiences are exactly alike. A lot of the information I initially found really scared me, especially what other patients had to say about MG. As frustrating as it is, I think waiting to see how you personally respond to treatment and taking things one step at a time is really important.
Has connecting online been a part of your patient journey so far? Why or why not–and if so, what has that looked like?
The option of having a thymectomy was presented to me fairly early on after my diagnosis, which, at 19, felt like a very big decision to me. They had outlined the possibilities for me – of the people who choose thymectomy, a third of them go into remission, a third can be on lower medication doses, and a third don’t see any benefit. That felt like a lot of uncertainty – a major surgery for potentially no benefit? I didn’t know what to do.
Feeling bright eyed and fresh out of my first year of a science undergrad, I decided to scour the research. What I found didn’t help me much – even though I could grasp the literature well enough, research couldn’t tell me if thymectomy would work for me personally. I decided to seek out other MG patients, not for any specific advice on what to do, but just to see how they made the decision and if they felt it worked with them. I talked to people who did have thymectomy and had a good experience, people who had bad experiences, and people who didn’t opt for the surgery. It really helped me think about what I valued and wanted for myself. Now, four years on, I’m the one getting messages from people thinking about thymectomy.
Through posting about MG online, I also connected with other young people with a variety of chronic illnesses. One thing I learned is that despite having different symptoms, there are so many experiences that are shared across disease boundaries. It was especially helpful for me to find other people who were also in school and managing chronic illness – their shared experiences helped me navigate my own path through my undergrad degree.
This June, learn more about MG from the Myaesthenia Gravis Foundation of America, and show your support for people living with MG by wearing teal!