When our daughter Grace was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) at age 15, I didn’t think anything good could come of it. However, as time has passed and her health has improved, I’ve found that some things have changed for the better. One positive result is Grace’s…
I grew up in a little town tucked away in northeastern Pennsylvania. Every Wednesday and Sunday, my family members would wind our way down the mountain on a stretch of narrow roads. We’d head through the countryside to the majestic steepled church, with stained-glass windows and family surrounding us. If…
None of us want to become a part of a statistic like the number of people with Lambert-Eaton myasthenic syndrome (LEMS). Odds are that most of us won’t, considering that there are only an estimated 400 known cases of LEMS in the United States. The disease’s prevalence in…
Note: This column describes the experiences the author’s daughter had with various medications. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Five years ago, our daughter Grace began her journey with Lambert-Eaton myasthenic syndrome (LEMS). She was diagnosed…
Our family has eclectic interests. These differences have been amplified by our middle daughter’s diagnosis of Lambert-Eaton myasthenic syndrome (LEMS) when she was 15 years old. That daughter, Grace, is a homebody. She’s always been content within the four walls we call home. Understandably, LEMS has intensified her…
Some memories are indelibly scored into the fabric of our being. For me, one such memory is the first time I pushed my daughter Grace in a wheelchair. She wasn’t yet diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) at the time, but her symptoms had left her incapacitated.
We’re pet people in my family. Specifically, we love dogs. There’s nothing like coming home to a dog that is overcome with excitement at the sight of you. You can’t help but smile. Our current dog, a basset hound named Pumpkin, is a huge part of our family. Where we…
If you’ve recently been diagnosed with Lambert-Eaton myasthenic syndrome (LEMS), you’ve come to the right place. Finding the LEMS community was life-changing for me, and I hope it will be for you, too. People usually don’t see a rare disease diagnosis coming. It’s like a freight…
Our daughter Grace was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) in July 2019, when she was just 15 years old. To say this diagnosis changed our lives is an understatement. Grace’s health deteriorated rapidly. We had to move to be close to her doctor. My husband changed…
So many people in this world live isolated lives. Add in a rare disease and we can feel very alone. I’m grateful that we in the Lambert-Eaton myasthenic syndrome (LEMS) community have one another. We come from all walks of life and live around the globe, yet despite…
Get regular updates to your inbox.