Columns

Children of ‘Rare Parents’ Give Me Hope

One of the first Lambert-Eaton myasthenic syndrome (LEMS) patients I had the pleasure of meeting in real life was Romy Braunstein. Romy is taller than me, which is no small feat because I am pushing 6 feet. Her personality is larger than life, and her sense of humor has…

Not All Superheroes Wear Capes

I wasn’t diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) until my sons were grown. Upon his return from serving in the Navy, one of my sons remarked how happy he was that I could make weekend plans with friends instead of “just recovering each weekend after working all week” like…

My Mental Health Safety Net

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,…

Was My Fibromyalgia a Misdiagnosis?

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…

I Had Many Vague Symptoms Before My LEMS Diagnosis

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…

Severe Scoliosis: My First Neuromuscular Disease Symptom

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…