Columns

Our Daughter Has Stopped IVIG Treatment

One of the first treatments offered to our daughter Grace, now 16, after she was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) was intravenous immunoglobulin (IVIG). Every three or four weeks we would head down to Wolfson Children’s Hospital in Jacksonville, Florida, for her infusion. The hospital always did a…

Our Daughter Is the Rarest of the Rare

From the start, our daughter’s life was harder than most. When we adopted Grace when she was just 13 months old, she was among the roughly 81,000 children adopted by American families from China in the late 1990s and early 2ooos. She came to us underweight and malnourished. She…

Our Experience Transitioning From Ruzurgi to Firdapse

In May 2019, the U.S. Food and Drug Administration (FDA) approved Ruzurgi (amifampridine) for the treatment of Lambert-Eaton myasthenic syndrome (LEMS) in children ages 6-16. Our daughter Grace, then 14, was diagnosed with LEMS that July. Although receiving the diagnosis was hard, we were relieved that medication was available.

Benefiting From Advances in Modern Medicine

This year has gotten off to a rocky start in our family. It began with a call on Jan. 3 informing us that my father had a heart attack. He had just returned home after a visit with us in Florida. Thankfully, he got the medical care he needed and…

Treating Our Daughter’s COVID-19 With Sotrovimab

Given the most recent COVID-19 surge, it seems that many people are resigned to getting sick with the new coronavirus variant, omicron. I pushed hard against this idea because our daughter Grace, 16, has the autoimmune disease Lambert-Eaton myasthenic syndrome. Although many have described omicron as just a bad cold,…

A Word From One of the Younger LEMS Patients

It has been just over a year since I began writing this column, “Stretcher-Bearers.” What a blessing it has been to become a part of this community and to be able to share information and words of encouragement. Since I write mostly about my daughter’s experience…