Columns

In my last column, I shared wording that I’ve used to explain Lambert-Eaton myasthenic syndrome (LEMS) to my family, friends, and medical providers. However, I feel that I would be doing the LEMS, rare disease, and chronic illness communities a disservice if I didn’t admit that, at times,…

If you are like me, when you finally received a diagnosis of Lambert-Eaton myasthenic syndrome (LEMS), you were excited to tell the world what has been causing your unexplained exhaustion, numbness, weakness, difficulty swallowing, and difficulty walking. I was ready to shout it from the rooftops! Because we have…

I was in my mid-30s when my painful, yet vague Lambert-Eaton myasthenic syndrome (LEMS) symptoms began to interfere with my daily life. I was unable to walk any distance, had widespread bone pain, and experienced extreme fatigue. My career had transitioned from public health education to pharmaceutical sales…

As a Lambert-Eaton myasthenic syndrome (LEMS) patient, you might not have identified with the experiences that I described in my previous column. However, I’m sure that most of you will relate to this one. LEMS symptoms are vague, and due to that factor, as well as the…

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…