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The paths of those affected by Lambert-Eaton myasthenic syndrome (LEMS) hold many twists and turns. Our family has experienced many ups and downs since our daughter Grace was diagnosed. The promise of treatment brought elation, but the reality of minimal results from that…

Eeyore from “Winnie the Pooh” has never been my favorite character. For most of my life, I could not relate to his ever sad disposition. He always seemed so melancholy and intent on seeing the negative side of life. In contrast, I saw myself as…

Many people with Lambert-Eaton myasthenic syndrome (LEMS) wait an extremely long time for a diagnosis. Our family waited nine months, a relatively short time compared with others in the LEMS community.  As we waited for a diagnosis to be confirmed for our 16-year-old daughter Grace,…

I have often said that we would try any treatment if it meant more mobility, strength, and health for our daughter Grace, who is living with Lambert-Eaton myasthenic syndrome (LEMS).  Along with the various medicines and treatments approved by the U.S. Food and Drug Administration,…

I consider myself a pretty resilient person. My husband is in the U.S. Navy, and I can accommodate most situations.  For example, we have moved 10 times, three of them internationally. I have raised our kids without my husband during five deployments. We have grown our…

Our family started quarantining almost a year ago this week. Our daughter Grace has a compromised immune system due to Lambert-Eaton myasthenic syndrome, which made us especially careful and protective of her health and well-being. For the first four months of quarantine, we embraced family time wholeheartedly. Our son was…

It is humbling to know that we are the beneficiaries of those who have gone before us. We stand on the shoulders of those who worked hard for us to benefit from their efforts and discoveries. We need not look further than the name of the disease that touches this…

Receiving a diagnosis of Lambert-Eaton myasthenic syndrome can be overwhelming. For many, the journey likely entailed multiple visits to doctors and many years of waiting. When we received our daughter Grace’s diagnosis, we learned there is no cure, but we were encouraged upon discovering that numerous treatments are available…

When our daughter Grace began exhibiting troubling signs of muscle weakness at age 14, symptoms that eventually led to a diagnosis of Lambert-Eaton myasthenic syndrome, our family quickly went into emergency mode. Our days and nights were consumed with care for her changing needs, medical appointments, treatment plans,…

We live with a thief lurking among us.   Whether it is due to Lambert-Eaton myasthenic syndrome (LEMS) or another rare disease, we all feel the loss of what is stolen from our families and loved ones with a chronic illness.   When our daughter,…