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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…

What a difference 4 years have made in fighting Lambert-Eaton

When our daughter Grace was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) at age 15, I thought our lives would never be the same again. Her life, and ours, seemed to come to a screeching halt. LEMS interrupted and restructured our daughter’s active life. Everything changed to accommodate her…

My daughter decides how much to share about her LEMS

For most of my life, I’ve been an open book. I tend to trust people quickly and make fast friends. That’s partly out of necessity, as I’ve been a military wife for most of my adulthood and military families tend to settle in quickly. In my case, that tendency also…