It started with a phone call. Our daughter Grace, who was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) at age 15, was due for her annual neurology appointment. Things had been pretty quiet with her health since her treatment plan was implemented almost four years ago. Grace has responded…
We all know that Lambert-Eaton myasthenic syndrome (LEMS) doesn’t discriminate. Those who are affected by the disease come from all walks of life and from all over the world. Today, I’m excited to introduce my readers to Sam Joseph, who hails from Worcestershire, England. Sam and I first “met” on…
It’s been years since my family has seen snow. Four years ago, we moved across the country from the frigid north of New England to the balmy beaches of Florida. At the time, our daughter Grace was exhibiting signs of what we now know is Lambert-Eaton myasthenic syndrome (LEMS),…
The first time we noticed our daughter Grace exhibiting symptoms of what we now know to be Lambert-Eaton myasthenic syndrome (LEMS), we were in the airport traveling to Texas for Christmas. Our three kids were dragging their suitcases through the parking garage to the check-in counter. Suddenly, we…
All of my babies have been little since birth. My two biological children weighed 6 pounds or less when they were born. Even our daughter Grace, who was adopted at 13 months old, was a tiny little thing when she came home to us. Except for Grace, food just didn’t…
It had been a good day. My daughter Grace and I accomplished things I never thought she’d be able to do again. Her diagnosis of Lambert-Easton myasthenic syndrome (LEMS) several years earlier had upended our world and everything she had known. But with the right treatments, Grace…
For women with Lambert-Eaton myasthenic syndrome (LEMS), it’s concerning that there are little to no data on pregnancy and LEMS. That’s why I’m thrilled to introduce Kristin Williams, a 31-year-old registered nurse from New York who has firsthand experience with both. Kristin and I met through the…
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…
Get regular updates to your inbox.