Myasthenia Gravis: My Story with a Rare Disease

I was diagnosed with Myasthenia Gravis (MG) at the age of 2. It is an autoimmune, neuromuscular disorder. This means the body is attacking itself. The exact science behind this disease is a little complicated but it has to do with the neurotransmitter acetylcholine and its receptors being blocked or damaged. If you want to learn more about this, check the first link below.

Some common characteristics of the disease are: ptosis (droopy eyelids), double vision, muscle weakness in the limbs, neck, and face. There are also two types of MG: Ocular (only affecting the eyes) and Generalized (affecting the body).

It is most common in older men and younger women. But not usually seen in young children. I remember going to my neurologist and him telling me there was only one other kid he knew of that had a diagnosis of MG.

I was diagnosed because my eyelid started to droop after I took antibiotics for an infected stye on my eye. I had a lot of testing done to see why this was happening. And I was finally tested with a muscle strengthener called Mestinon and my eyelid opened almost immediately afterward. I had to take Mestinon for years to help treat the disease. My mom would sneak the pills in my food in order for me to take them. I have one memory of her putting banana with my pill and I can not eat a banana to this day.

I am now in remission and have been for several years. Although I do have to be careful about what medications I take and not getting too stressed because those can trigger the disease because there is no cure and it will never go away.

This disease has helped shape who I am and has lead me to want to work with people who have chronic illness in my future career. I want to, more specifically, work with pregnant people who also have chronic illness. In my research I learned that pregnancy can sometimes alleviate symptoms of chronic illness but for others it exacerbates them.

If you have this disease or even a different one, I hope you are doing well and I wish you the best in your treatment.

Resources:

https://www.mayoclinic.org/diseases-conditions/myasthenia-gravis/symptoms-causes/syc-20352036

http://myasthenia.org/

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