Most of us in the Lambert-Eaton myasthenic syndrome (LEMS) community have been following a court case involving Ruzurgi (amifampridine), the only LEMS treatment approved by the U.S. Food and Drug Administration for children under 17. In 2019, Catalyst Pharmaceuticals sued the FDA and other parties over the agency’s…
“There are far, far better things ahead than anything we leave behind.” – C. S. Lewis As the wife of an active-duty military member for 23 years, I have known my share of change. Usually, our family embraced a new duty station with gusto. We often planted quickly and firmly…
When my son was in high school, he had an individual education plan for math. This plan accommodated his need for extra help and time in a subject that didn’t make sense to him. Otherwise, he was a very successful student. He received a perfect score on his language arts…
Raising a child with a rare disease like Lambert-Eaton myasthenic syndrome (LEMS) has its challenges. One area that was challenging for me was knowing when to push beyond the bounds of normal advocacy for something I knew my daughter Grace needed. With practice and time, I have grown stronger…
I felt very alone when our daughter, Grace, was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS). I had no idea where to turn for help. Our family didn’t know anyone with LEMS, or any other rare disease. Her doctor had limited resources and knowledge of the condition. We were walking blindly…
Most lives have been interrupted by the events of the past two years. People across the globe have had to cancel plans, miss family reunions and weddings, curb travel, and limit contact with others. Our family has been no exception. Most notably, during the pandemic, our eldest son moved to…
Every six months, my 16-year-old daughter, Grace, receives a dose of Rituxan (rituximab), the latest and greatest treatment we have added to her regimen for Lambert-Eaton myasthenic syndrome (LEMS). Before that first dose, Grace was exhausted all the time. She was able to do very little outside the house…
Some days are just harder than others. Wouldn’t you agree? Much of the time, I feel like we are moving along nicely on this rare disease journey. We are in a good rhythm with the treatment plan for our 16-year-old daughter, Grace, who has Lambert-Eaton myasthenic syndrome (LEMS). Yet, out…
At this time last week, I found myself back in the place where our journey with Lambert-Eaton myasthenic syndrome (LEMS) began. We were living in Connecticut when our daughter Grace began experiencing unexplainable symptoms, including random falls, walking with a limp, and arm weakness. Thus began our exploration into the…
One of the first accommodations we made after our daughter Grace was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) was acquiring a disabled person parking permit. One of the prominent symptoms of LEMS is muscle weakness, which can make walking for any length of time very difficult. Grace had an…
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