My journey with myasthenia gravis (MG) began in October 2023. For the previous two years, I had been experiencing vision issues—sporadic double vision and a droopy eyelid that had been a lifelong companion. Initially, these symptoms were more of an annoyance than a serious concern. However, as they started to significantly affect my daily life, I decided to consult a specialist. To my surprise, I was told that it was unlikely I had MG, a rare and perplexing disease. But after undergoing several tests, the diagnosis was confirmed. 

 

At the time, I was dealing with various other health issues, so I didn't immediately delve into the implications of my MG diagnosis. Additionally, I noticed that my doctors did not could not provide much detailed information at the time. It was already a struggle even to get diagnosed—they felt I was "too young to have MG," so they initially refused to test me until I was able to switch doctors and advocate for myself. Knowing that I needed to see a neurologist, I attempted to schedule an appointment. Unfortunately, due to the limited number of specialists in my state, I couldn't secure an appointment until the following year. 

 

By December, my MG symptoms had worsened considerably. The occasional vision problems had evolved into generalized muscle weakness and extreme fatigue. It felt like weights were constantly pulling down my arms, fingers, and wrists. Everyday activities became challenging — washing my hair, holding up a pot, even typing became monumental tasks. It was during this time of struggle and adaptation that I discovered I was pregnant. 

 

Finding out I was pregnant was a moment of immense joy for my partner and me. We had already been planning for this next chapter in our lives. However, managing a pregnancy while dealing with a newly diagnosed, serious condition like MG was daunting. I knew I would need close monitoring, especially since I hadn't yet found a successful medication regimen to manage my symptoms. 

 

During the initial weeks of my pregnancy, I experienced intense guilt and feelings of being a burden. My physical limitations made it nearly impossible to keep up with my full-time corporate job and household responsibilities. Yet, there were moments when I felt a semblance of control over my symptoms, particularly around week eight of my pregnancy. Unfortunately, this respite was short lived. 

 

At 12 weeks pregnant, I experienced a severe MG flare-up, exacerbated by a stomach virus. The flare-up affected my breathing and led to an emergency room visit to ensure the safety of both me and my baby. This episode was a stark reminder of the unpredictability and severity of MG, especially in pregnancy.  

 

I am currently 26 weeks pregnant, and I am doing a lot better. I only have flares when I get sick or extremely stressed. I have found ways to keep myself at peace (meditation, yoga, my art). Baby Romare is doing amazing and growing by the minute. I still have a long road ahead as I prepare a birth plan with my doctors, but I feel confident in my future.

 

Throughout this journey, I have been incredibly fortunate to find care with the UAB Maternal Fetal Medicine team. They have been amazing in my pregnancy, helping me make the best decisions for me myself and for the baby. Their expertise and compassion have made a significant difference in managing my condition and navigating my pregnancy.  

 

I found companionship in my MG support group. Understanding how to further advocate for myself, learn more about MG, and find others with similar stories to my own. I am also lucky to have such a strong support system in my partner, Nick. He has been there to guide me through the worst of my days. He picks up where I lack to ensure our day-to-day life keeps moving. I know I am strong and can handle anything thrown at me, but having him by my side makes it so much easier to navigate. 

 

The road ahead is uncertain, but with the support of my healthcare team, my partner, and my loved ones, I am hopeful. Living with MG has taught me the importance of resilience and the value of a strong support system. I am determined to face each challenge with courage and to cherish the moments of joy and progress along the way. 

Thank you for sharing this journey with me.  
 
— Shannon Murray + Baby Romare-Murray