Myasthenia Gravis: My Story with a Rare Disease

*June is Myasthenia Gravis awareness month*

What is Myasthenia Gravis?

Myasthenia Gravis (MG) is an autoimmune, neuromuscular disorder. It is characterized by muscle weakness. It is sometimes referred to as the “snowflake disease” because it affects each person differently.

Ocular MG affects the eyes. It can cause blurred or double vision and pstosis (droopy eyelid).

Generalized MG affects the body. It can cause weakness of the face, neck, and limbs.

For more information on MG please refer to the resources below.

My Story

I was diagnosed with MG at the age of 2. I had ptosis. One of my eyes started to droop after I started antibiotics for a stye in my eye. My parents were concerned so they took me to the doctors. I had a bunch of tests done but when I was given Mestinon, a muscle strengthener, my eye opened up. I was then diagnosed with MG.

I remember my mom hiding my Mestinon pills in my food but I’d always find them and she would have to force me to swallow them because I needed them. I hated taking my medicine (I am pretty good about it now though).

I didn’t really know what MG was until I was a little older. I remember my mom talking to me about it in the kitchen one day. It was kind of scary to actually understand that I had a disease that could impact my life so greatly.

I then went into remission and am still in remission. I no longer have to take any medication for my MG. However, there is no cure.

There are somethings that can trigger MG symptoms like stress, illness, and some medications so I still have to be careful. But for the most part I don’t think too much about it anymore (expect during its awareness month).

MG has lead me to want to help others with chronic illness too. When I am finished with school I plan on developing new ways to help people with chronic illness have safe and healthy pregnancies.

Resources:

http://www.myastheniagravis.org/

https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Myasthenia-Gravis-Fact-Sheet

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

Leave a Reply

Your email address will not be published. Required fields are marked *

two × 2 =