Grace Dunham, 19, regains independence after being diagnosed with a rare autoimmune disorder.
My journey living with a rare neurologic disease started when I was 14. I noticed a limp during a basketball game but did not think much of it and kept playing; however, it soon got worse. Running across the court, I felt like I had weights on my legs.
My condition deteriorated rapidly. My legs and arms became very weak. I could not raise myself from a chair or walk up stairs. Initial tests for muscle disorders came back negative, prompting the doctors to investigate other rare conditions. Eventually, they diagnosed me with Lambert-Eaton myasthenic syndrome (LEMS). This autoimmune disorder disrupts communication between nerve cells and muscles, leading to the gradual onset of muscle weakness. Only about a dozen cases of LEMS in children have been documented in the United States.
The diagnosis was a relief but also hard to fully understand. I focused on just getting through each day. The most noticeable loss for me was my independence. Basic things like washing my hair or moving around the house became difficult or impossible. I also felt isolated because I had just moved to a new town, Panama City, FL, away from my friends, and was homeschooled because walking around school left me too exhausted. My older brother was in college, and my little sister was too young to understand what was happening. My mom, Lori, became my support system and advocate while my dad, Darin, worked long hours with the Navy.
Adjusting to the treatment was tough. I started with intravenous immunoglobulin and rituximab, which helped me manage basic functions again, but infusions took hours and were exhausting. My doctor added a new drug, Firdapse (amifampridine phosphate or 3,4-Diaminopyridine), the only LEMS treatment the U.S. Food and Drug Administration has approved.
These medications helped me regain more independence and motion. I can once again do things I used to take for granted, such as cooking, going up stairs, and walking with more stability. I even work part-time at a grocery store.
I can see how much this experience has shaped me. I attend Southeastern University, where I major in human services, minor in psychology, and take classes to earn a certificate in patient advocacy. I hope to work in physical therapy or a similar field where I can help others navigate health challenges. This career path feels personal, and I do not think I would have pursued it if I did not have a rare disease myself.
For anyone dealing with a rare condition, it's important to stay connected to your family, doctors, and others the disease affects. Advocacy matters, and standing up for yourself can make all the difference. As I build more confidence in advocating for and talking about LEMS, I hope to support others in the community.
—As told to Paul Wynn
