Stretcher-Bearers — Lori Dunham

One of the common symptoms of Lambert-Eaton myasthenic syndrome (LEMS) is muscle weakness, which, for many, causes problems with balance and gait. When our daughter Grace was diagnosed at age 15, we could first see her…

Recently, my daughter Grace and I had the privilege of attending the Muscular Dystrophy Association’s MDA Clinical & Scientific Conference in Dallas. It was an honor for us to represent the Lambert-Eaton LEMS Family Association, along with…

“Continuous effort — not strength or intelligence — is the key to unlocking and using our potential.” — Liane Cordes Physical therapy is often the first step toward renewed strength for those with Lambert-Eaton myasthenic syndrome (LEMS).

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,…

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…

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,…

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…

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…

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…

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.

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…

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…