The Reality of Generalized Myasthenia Gravis: A Patient’s Perspective

Credit: Adobe Stock/lzf

For Rare Disease Day, we’re highlighting Tina B., a patient living with generalized myasthenia gravis (gMG), a rare autoimmune disease that significantly impacted her life. Despite an active and healthy lifestyle, her diagnosis brought unexpected challenges, but with the right treatment, she has reclaimed her independence and continues to enjoy life with her family.

Can you share a bit about your life before your gMG diagnosis? What were some of the first symptoms you noticed?

Tina B: I’ve always led a healthy lifestyle that included clean eating and running. My husband and I were also very active with our son and daughter, their spouses and our five grandkids, and we love traveling. We had big plans to travel as we looked forward to retirement. But my retirement didn’t start off like I hoped.

My life shifted when I suddenly experienced double vision when driving my granddaughter to school. This alarmed me, and I then noticed my eyelids started to droop and my feet gave out when I ran.

How did your symptoms progress, and what was the turning point that made you realize something was seriously wrong?

TB: I called my doctor straight away when those first symptoms showed up and he got me in immediately, so I was lucky to be diagnosed fairly quickly. However, my gMG still impacted my day-to-day life. I couldn’t walk or hold my head or arms up, I fell a lot, and my husband had to take time off work to care for me and help me with my day-to-day life, including doing my hair. He really was my arms and legs during the peak of my symptoms.

Did you experience any disbelief or misunderstanding from doctors, family or friends about your condition?

TB: I was fortunate that my doctor took me seriously and tested me right away for a tumor or stroke. Those tests came back clear, but then my son-in-law, who is a paramedic, did some research and he said to me, “You have symptoms of this really rare disease. Ask them to check that.”

The next time I saw my doctor, I told him what my son-in-law found and even though he’d never seen anyone with MG, he thought it could be it. He immediately got on the phone with a neurologist he knew and got me in within a few days. The neurologist tested me first thing and I received my diagnosis soon after.

So, I was very fortunate that my doctors really listened to me and believed me and that my family was supportive and understanding.

Can you tell us about the treatment you received and how it changed your life?

TB: Even with the correct diagnosis, my initial treatment options weren’t effective for me and my condition worsened. I had muscle weakness that led to me relying on a wheelchair, and I was largely incapacitated for nearly a year. My specialist said it was one of the worst cases of gMG he’d seen.

My specialist finally found a treatment that worked for me: zilucoplan, a self-administered treatment for gMG. I experienced a significant improvement, a significant recovery of my life. For me, it has opened a lot of doors and now my retirement is what I always envisioned. I live a few hours away from my specialist, so having the ability to self-inject at home is helpful to me.

I can spend more time with family and friends, and plan activities that I couldn’t before. I’m excited to be working out again and spending time with my five grandchildren. My family has resumed traveling, including a fun Christmas trip to Kansas City and visiting Branson Landing. And my husband and I are planning a trip for our 35th anniversary this year!

What do you wish more people — including doctors — knew about gMG?

TB: MG can and will hit out of nowhere — no matter how healthy and active a life you have lived. It has no genetics or parameters of whom it will target. As hard as you try to “power through” it and make yourself move, you have no control. However, there are new and exciting treatment options that can give you a lot of your life back.

How do you think Rare Disease Day can help bring more attention to conditions like gMG?

TB: When I was first diagnosed in the spring of 2021, I had never heard of this disease. The moment it was confirmed this was indeed what I had, I began extensive research into what it was, how to live with it, how to mentally accept the challenges and how to prepare to accept what once was your life is no longer. The information I found was not very helpful. It was mostly doom and gloom and so much so to the point I quit researching. It depressed me even further. Rare Disease Day helps inform the public of these types of autoimmune diseases that can totally change your life but also highlight a message of hope. Your life does not have to end once you receive a gMG diagnosis.

What are some of the biggest lessons you’ve learned from your journey with MG?

TB: As a patient, it’s important to stay diligent and proactive with your treatment. Many people don’t take their health seriously, and this experience taught me how important it is to do your research and understand what is happening with your condition and your treatment.

Is there anything else you’d like our audience to know?

TB: Be a researcher. Ask questions. Be an advocate for your health and your body. It is a very tough disease that robs you of your life as you once knew it, but it can be managed! It is a disease that currently has no cure, but there are options to make it easier to live life again. I was very active, I ate clean, I ran and worked out almost every day, and it still chose me. Mentally, I have had to accept that I will not run races again, but I am working out for an hour every day. I am taking care of my family, my home and myself. Once I accepted how my new life will be, I got busy to make it as good as I can and let go of the “old me.”