Our daughter Grace is more than three years out from her diagnosis of Lambert-Eaton myasthenic syndrome (LEMS). Until now, we’ve never met anyone in person who has LEMS. We’ve had wonderful friendships develop through Facebook groups, BioNews forums, Zoom town halls, and phone calls. But it’s not…
Last week, much of the northeastern United States was hunkered down for yet another nor’easter. As snow fell on our northern neighbors, here in the South, we were enjoying spring-like weather. Many of the local schools are out for spring break. My back porch is full of flowers blooming red…
What is the first thing most of us did when the doctor mentioned Lambert-Eaton myasthenic syndrome (LEMS) as a possible diagnosis? We Googled it, of course. We know that, while the internet offers a wealth of information, it also documents every worst-case scenario. Still, desperate for information, we…
March brings with it a bag of mixed emotions for this mama’s heart. In March 2005, our daughter was born to a mother who would never watch her grow up. She made the hard decision to leave her at the gate of an orphanage instead. The following March, we…
When I hear statistics about how many people are affected by the rare disease Lambert-Eaton myasthenic syndrome (LEMS), I’m overcome by the minuscule odds that my daughter Grace is one of them. How could such a rare and unknown illness affect my child? Having LEMS as an adult is…
I’m often surprised by the general lack of understanding about chronic illness and rare disease, which reminds me just how important it is to share our stories. In doing so, we can combat common misconceptions. Many friends and acquaintances knew about our daughter Grace’s declining health and eventual…
This week marks a new chapter in our daughter Grace’s rare disease journey. A few months ago, her pediatric neuromuscular neurologist announced that he was leaving his practice, and we had our final appointment with him last week. When Grace was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS)…
Most people who have faced a health crisis understand the relief of finally receiving a diagnosis. Once this happens, a plan of action can be put into place. When our daughter Grace was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) at 15 years old, I was definitely relieved to know…
Every six months, my daughter Grace and I go to the children’s hospital for her Rituxan (rituximab) infusions. This has proven to be one of the most effective treatments for Grace after she was diagnosed with Lambert-Eaton myasthenic syndrome at age 15. The Rituxan infusions are usually preceded…
I am not a skilled photographer. Family milestones come and go, and I’ll forget to document them. Christmas will slip by and I won’t take any photos. The same goes for birthdays. I’d like to think I’m too focused on living in the moment to stop and capture it in…
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