Columns

Cheering On Those Running the Same Race as Us

Living with Lambert-Eaton myasthenic syndrome (LEMS) or another rare disease, or caring for someone with one, comes with many challenges. We often find ourselves within a vacuum because that very rareness makes information sparse. Finding others with the same illness and connecting with them are key to not…

A Horse and a Donkey Remind Me of the Importance of Relationships

One of the most positive experiences that has come from our 17-year-old daughter Grace being diagnosed with Lambert-Eaton myasthenic syndrome has been the opportunity to attend horse therapy with a nonprofit organization called Grace Under the Oaks. I have shared in the past the incredible improvements this therapy…

Finding the Strength to Fight Another Day

I remember the exact moment I realized we were facing a giant in my daughter Grace’s life. Barely a teenager, she had symptoms that eventually resulted in a diagnosis of Lambert-Eaton myasthenic syndrome (LEMS). The realization happened before all of the MRIs, the CT scans, the cancer scare, and the…

The Best Thing I Can Do as a Caregiver

I love taking care of people. I always wanted a family, and I’ve loved my role as a mother and wife first and foremost. However, our daughter’s diagnosis of Lambert-Eaton myasthenic syndrome at age 14 added a whole new dimension to my caretaker duties. I was unprepared for…

The Fall That Brought Us Down to Earth

I have never been a fan of roller coasters. I learned early on that I like to keep my feet firmly planted on solid ground. Growing up in Pennsylvania, I recall many field trips to Hersheypark. Even in my teenage years, I much preferred its tilt-a-whirl or bumper cars to…

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.