Stretcher-Bearers – a Column by Lori Dunham

Lori Dunham and her family have lived all over the world, thanks to the U.S. Navy. She and her husband have three children and currently live in North Florida. At age 14, their daughter was diagnosed with the rare disease Lambert-Eaton myasthenic syndrome. Lori’s mission in writing is to inspire and encourage those who find themselves in the role of caregiver to a loved one with a rare disease. When she is not writing or homeschooling her two youngest, Lori enjoys reading, baking, and spending time with family.

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…