Most people look back on being 13 with fond memories of passage into their teen years. Those memories might include sleepovers, getting their ears pierced, or other first steps of independence. For me, memories of my 13th year include enormous amounts of physical pain. It turns out that my first…
If you have a neuromuscular disease like Lambert-Eaton myasthenic syndrome (LEMS) or another invisible illness, you’ve been there. You’ve driven into the parking lot of a grocery store or another venue and decided to use your handicapped placard to avail of an accessible parking spot. While you don’t…
My previous column titled, “My Ace Scores Are High. How About Yours?” was not written in my typical motivational style. I avoided smoothing over the reality of the likely trigger of my autoimmune battle, because I recognized the need to acknowledge the daily struggles of others who are dealing…
The question that invariably follows my definition of Lambert-Eaton myasthenic syndrome (LEMS) is, “Why does someone get an autoimmune disease?” Most of us know someone with an autoimmune disease, and public figures have helped to bring these invisible illnesses into the spotlight. Actresses Selma Blair and Jameela…
Being diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) after living over a decade with progressive neuromuscular symptoms was a relief, at first. For so long, my symptoms came and went, and none of the specialists I saw could tell me what was causing them. However, my relief was quickly followed…
Patients across the United States receive regular phone calls about their intravenous immunoglobulin (IVIG) treatments. Typically, these calls are to confirm scheduled treatments. However, in recent weeks, the calls are causing distress by relaying messages such as the following: “Due to the nationwide IVIG shortage, we need to cancel…
“Dawn, what you have is extremely rare. It’s so rare that most doctors won’t see another patient with it during their entire careers.” These were the last words I expected to hear from my neurologist, Dr. Roople Unia, when she called to give me the results from my voltage-gated…
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