Recently, I wrote about our family’s periodic need to assess medication protocol. This helps us figure out what is and isn’t working. I am a caretaker of our 16-year-old daughter, Grace, who has Lambert-Eaton myasthenic syndrome (LEMS). It is important that I communicate with her to determine…
Most people in the rare disease community can relate to the constant march to various doctors in our quest to manage our health, or that of a loved one. Our doctors are invaluable. If we are really blessed, they walk compassionately beside us on the…
It seems that Lambert-Eaton myasthenic syndrome (LEMS) likes to keep us guessing. Two years after our daughter Grace’s diagnosis, we are still learning how the disease affects her. On many days, we feel that Grace has settled into a manageable routine. We see improvement in her…
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,…
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