I was 30 when I was diagnosed with myasthenia gravis. At the time, it felt like most of the information I found about the disease was geared toward older people, and I struggled to find others who could relate to my experience. Now, seven years later, I want to be more involved in raising awareness, sharing my story, and helping others who might feel alone in their diagnosis.
I was born and raised in Cherry Hill, New Jersey, where I still live with my husband and our two children, Summer (16) and Mason (9), and our little Boston Terrier. My son even goes to the same elementary school I attended. I’ve always worked in the healthcare industry and currently work for a medical malpractice insurance brokerage. Outside of work, I love cooking, reading, working out, and spending time with my family at sports events. Go, Eagles!
Before my diagnosis, I was a big runner. I remember the moment it hit me—one day, I just couldn’t run anymore. My husband didn’t understand what was going on. It was hard for me to explain, but I just felt so fatigued.
Soon I started having blurry vision despite having perfect eyesight. I was having issues with simple tasks like brushing my teeth and putting my hair into a ponytail. I felt such extreme fatigue—I remember crawling into a ball because my body felt so weak. I was dizzy. I couldn’t pick up Mason, who was three and a half at the time, which was really hard emotionally. Doctors initially thought it might be vertigo or something else, no one was sure. I went through many tests, rounds of bloodwork, and hospital visits trying to find answers.
My older sister was diagnosed with MG when she was around 18. She had a tumor on her thymus gland and had a thymectomy, and, fortunately, she went into complete remission. Because of her experience, I pushed for an MG test. The doctor initially dismissed the idea—saying that siblings couldn’t both have it—but my results came back with an incredibly high AChR antibody level.
Even my parents were shocked to hear that I had MG because my symptoms were so different from my sister’s. But they call MG a “snowflake disease” because everyone’s symptoms are different. That’s one reason the diagnosis can be so difficult.
Getting in to see a specialist took months, and during that time, I felt extremely depressed and helpless. I might wake up feeling okay, but by the end of the day, I was completely drained. Eventually, I started IVIG treatments, which I relied on for about 3.5 years.
Now, I’m on one of the new compliment inhibitor treatments, which has been life changing. I can do most things I want to do, though I still have to be mindful of my limits and make sure to schedule in rest. I’ve been able to stop taking steroids and Mestinon, which has been a huge relief.
I have been lucky with my neurologist, Dr. Bromley, who has been with me for seven years. His office even has a small infusion suite where I get my treatments, and he can check in if needed.
But accessing these treatments comes with challenges. There are always insurance approvals to navigate. I have been doing infusions every two or three weeks for years. When Mason was young, I would bring him with me with a snack and a tablet to keep him busy. IVIG can take about four and a half hours. Now I work remotely so I can bring my computer and get work done during my infusion.
Early on, I kept a lot of my diagnosis to myself—I didn’t want to talk about it. I couldn’t find a support group that was the right fit – the meetings could feel more discouraging than uplifting. Over time, though, I realized that I want to be a part of the MG community in a way that’s inspiring and motivating for others. Yes, MG is challenging, but you can still find ways to enjoy life. My neurologist has always encouraged me to stay active, and I’ve found that weightlifting and fitness help me feel stronger, both physically and mentally. It felt really good to get back to something I love.
Living with MG has taught me not to take my health for granted. It has forced me to listen to my body more and appreciate the small moments with my family. One of the hardest parts of this disease is that it’s invisible—people might see me and think I look fine, but they don’t see the fatigue or the effort it takes to keep going.
If there’s one thing I would tell others, it’s to trust themselves. I knew something was wrong with me, even when doctors initially dismissed it. If you feel like something isn’t right, follow your gut and advocate for yourself. I hope that by sharing my story, I can help others feel seen, supported, and empowered to keep moving forward.