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This has been a year of firsts for Lambert-Eaton myasthenic syndrome (LEMS) patients. Two medications approved by the U.S. Food and Drug Administration became commercially available for patients. It is nearly unheard of to have approvals for a single rare disease within months of each other. Patients now…

When I published my first blog post for “The Battle Within,” I was thrilled to receive a comment from a woman in Dallas named Betty Ann Lasley. Not only did Betty Ann become a fan of my blog, she became a very dear friend of mine. At my first…

When you take a plethora of medications to manage multiple chronic conditions, it’s only a matter of time before some of the side effects catch up to you. I’ve battled chronic migraines since college. I remember my first migraine hitting me while I was living in my freshman dorm. I…

When I checked into my last day of immunoglobulin therapy last week, I sat next to another patient in the waiting area. She looked over at me and said: “I’ve read all of your blog articles. It’s nice to have them, because you really do understand what we go…

Five years ago, Will Schuller was thoroughly enjoying his senior year in high school when he began experiencing symptoms of Lambert-Eaton myasthenic syndrome (LEMS). He was in the marching band, running 25 miles a week, and taking four Advanced Placement classes and one honors class when his life suddenly changed.

Spontaneity is what I miss most about my pre-LEMS life. No longer can I hop in the car and go to a concert, the beach, or a quick weekend away without planning around meds and treatment schedules. Even with the best-laid plans, I find myself pulling over to make sure…

I recently attended the first meeting of the Northern New England Myasthenia Gravis Support Group in Portland, Maine. The event was hosted by a pharmaceutical company to promote its new product. However, I didn’t let that deter me. I wanted to meet other local myasthenia patients like myself. The…

I used to pass out at the sight of blood. As a toddler, I saw the blood from my mother’s suicide attempt. The images from that night will forever be 10-second flashbacks in my brain. Fainting was my body’s way of protecting myself from more trauma. As I grew older,…

Did you know that October is “National Disability Employment Awareness Month“? I hadn’t realized it until midmonth, though I’m legally disabled and employed as a writer. This year’s theme, “The Right Talent, Right Now,” jumped out at me as thoughts swirled in my head about having a month dedicated…

We’ve all been there. Our doctors suggest a new treatment for our rare disease, and after consulting with other patients through social media, we decide that the option is too scary. I did this with intravenous immunoglobulin (IVIG) replacement therapy. For more than a year, I held my neurologist…