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On LEMS Awareness Day, let’s continue to grow our community

I remember the moment I realized our daughter Grace had Lambert-Eaton myasthenic syndrome (LEMS) like it was yesterday. It was a hot, summer day in Florida. I had sequestered myself on our outdoor balcony to look through her medical chart. I hadn’t yet heard from Grace’s doctor after he’d…

Annual MDA conference prompts solidarity, gratitude, and hope

I have trained myself to look for the good in situations throughout my adult life. It’s not always easy. When my daughter Grace was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS), I never thought I’d see good come from it. However, in time, good things have happened directly because…

The uncharted territory of pregnancy and Lambert-Eaton

I vividly remember trips to the library as a young girl when a research paper was due. Once there, I’d trudge to the reference section and spend hours hunting for answers and information from encyclopedias, periodic journals, and various books. Once I gathered the information, I’d type up my research…

After a LEMS diagnosis, good medication management is key

Once a month, Anovo pharmacy calls to refill my daughter Grace’s prescription of Firdapse (amifampridine). The conversation doesn’t vary from month to month. First, they’ll inform me the call is being recorded. Next, they’ll confirm some personal information. Finally, they’ll ask if Grace has missed a dose since…