By Alexis Rodriguez

When I was 24 years old, what started as a terrible sinus infection took a turn I never could have expected. I woke up one morning with unexplainable symptoms, and it changed the course of my life. I had double vision. One of my eyes was completely paralyzed, and eventually, it began to droop. It was my ophthalmologist who first said that I might have myasthenia gravis (MG) and suggested I go to see a neuro-ophthalmologist or neurologist who could confirm the diagnosis. Like many, I wasn’t aware of the condition and would soon come to learn that, for people like me living with this rare, chronic autoimmune disease, the body’s immune system essentially attacks itself, impacting muscle function.

I am one of the lucky ones because I was referred to knowledgeable specialists who diagnosed me accurately and quickly. Due to its varied symptoms and a general lack of awareness, people with MG can spend years without answers. They are often misdiagnosed or not believed. In fact, a report by UCB, in collaboration with MG advocacy organizations, found that MG patients were often misdiagnosed with mental health conditions, including depression.

I wish I could say that this wasn’t understandable, but the truth is that the overall experience of MG can be different for everyone. My journey, too, has had its own unique path. While I was able to get my ocular MG under control for two years after being diagnosed, it only took one fateful trip to the dentist for everything to change. It was a routine visit, and the dentist found a cavity. When I told them that I have MG and asked about potential interactions with medicines used during the procedure, they weren’t concerned and moved forward.

The day after the dental procedure, my MG symptoms returned and progressed to generalized MG (gMG). Going beyond my eyes now, my neck muscles were impacted, my extremities were impacted. Simple acts like walking and even brushing my teeth became difficult. Fortunately, my speech and ability to swallow were intact, as these are symptoms that can impact others living with gMG.

The report I referenced previously also highlights the importance of support systems in helping people affected by MG feel truly “seen,” and addressing the emotional and physical toll the disease can take on patients and caregivers. I can relate to this because after my gMG diagnosis, I was frustrated that I didn’t advocate for myself even harder. I sought out support but found that existing community groups lacked diversity – no one looked like me, both as someone younger living with MG and as a Latino.

So I took the bull by the horns and started MG Georgia, a support group that provides comfort and education for MG patients and their caregivers. We are based in Georgia but welcome people from across the country and around the world. I like to say that “MG doesn’t discriminate, so neither do we,” and I am proud to share that it has grown to be the largest MG support group in the U.S. Today, we’re on a mission to raise greater awareness of MG and provide hope to members of the community who, for too long, have lacked access to the resources they need to advocate for themselves.

Many of us living with MG are driven by hope. Hope of further advancements in diagnosis and treatment of MG and hope for a future where our condition is better understood by both providers and the general public. When I reflect on the needs of our community, my number one goal is to make sure that this knowledge continues to grow. By building greater awareness of the support that exists across our community, we can ensure that no one living with MG will have to experience this journey alone.

About the Author

This article was written by Alexis Rodriguez, who has been living with myasthenia gravis (MG) for over 25 years. As the founder of MG Georgia, a diverse, all-volunteer support group led by people affected by MG, Alexis seeks to provide support, comfort and education for those dealing with this rare condition. He is also a member of the Rare Disease Advisory Council of Georgia, a collaborative group of stakeholders including patients, caregivers, health care providers, researchers and advocacy organizations that advise the Georgia General Assembly and other state agencies and departments on the needs of individuals with rare diseases. A husband and father of three, Alexis lives with his family in Buford, Georgia.