Hi, I’m Sam! I’m excited to share my story with you. I was diagnosed with myasthenia gravis as a teenager and have been living with MG for nearly two decades. I hope my story can help folks, especially younger patients, feel that they are not alone.
I started to have ptosis and double vision at the end of my junior year of high school. As a teenager who was more preoccupied with friends and doing well in school, I initially dismissed it and thought it would eventually go away.
When the weakness progressed to my limbs, however, I realized that this was unusual and finally told my parents.
For nearly a year, my family and I visited multiple doctors in hopes of getting a diagnosis. I quickly became exposed to some of the many challenges that MG patients face when seeking healthcare.
For example, I often felt frustrated describing my symptoms and not being taken seriously. I remember being told that it was psychological or that I just needed glasses.
On top of that, my parents were immigrants to the U.S. and had a significant language barrier. I leaned heavily on my older sister to be my advocate. She not only acted as a translator, but she made sure that I was heard in my appointments and navigated the complex healthcare system to get me the treatment I needed.
When I was finally diagnosed with MG, my symptoms had worsened to a point where it was difficult to walk or even climb out of bed. While my friends were going off to college, I was focused on getting my MG symptoms under control.
After numerous IVIG treatments, steroids, a thymectomy, and continued use of Pyridostigmine, I am so fortunate to share that my symptoms have improved. I eventually went to college and started working after graduation. I am currently an analyst at a tech company and live in California with my husband, Addison, and our dog, Hugo.
Over time, I developed an understanding of the type of activities and situations that help or worsen my MG symptoms, and I’ve tried to incorporate those learnings in my day-to-day life to reduce my mental and physical stress. For fun, I enjoy reading, painting, and trying out new recipes.
It has been quite the journey balancing MG with life, work, and friends. I’ve learned to accept that life with MG will be different, but I can still live a happy and fulfilling one! It is because of my sister, my parents, and my experience that I am passionate about advocating for other MG patients and hope to give back to the MGFA community. I hope my story resonated with you and helped you in some small way.