For the first year after our daughter Grace was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS), our schedule was filled with doctors’ appointments. Referrals to neurologists, rheumatologists, dietitians, and physical therapists abounded. Add in monthly IVIG treatments, and it felt like we lived at the hospital.
As the mom of a 16-year-old daughter with a rare disease, I’ve had to learn how to accommodate Grace’s limitations. Many daily activities became much harder after she was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS). My goal is to make her life with LEMS as easy…
If anyone had told me three years ago how our life would look today, I would not have believed them. I never thought I’d be caring for a child with a rare disease. It is exhausting, rewarding, and I don’t think anyone can prepare for it. …
We are living in unprecedented times involving a pandemic and political and social unrest that has been debated in many homes and communities. Even amid all the disagreement and opposing views, I think most of us can agree that the benefits of community have been…
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…
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