“I alone cannot change the world, but I can cast a stone across the waters to create many ripples.” — Mother Teresa In my experience, if someone claims that you can’t make a difference in someone’s life, I’d guess they’ve never walked the hard road of…
Stretcher-Bearers — Lori Dunham
I am a mom to an adult daughter who has Lambert-Eaton myasthenic syndrome (LEMS). My daughter Grace was diagnosed at the age of 15, after nine months of falling, experiencing severe muscle weakness, and slurring her words. One of the most encouraging aspects of our LEMS journey has…

As the days slowly lengthen and stretch before us, I am faced with new challenges caused by Lambert-Eaton myasthenic syndrome (LEMS) and the limitations it places on our 16-year-old daughter, Grace. After a year gone topsy-turvy with COVID-19 protocols and accommodations, we came to a manageable…
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,…
Recent Posts
- Chatting with a pillar of the community about life with LEMS December 15, 2025
- Rare cases of LEMS in pregnancy show need for personalized care November 19, 2025
- Thanks to her LEMS treatment, my daughter is thriving November 17, 2025
- LEMS and autoimmune enteropathy co-occur in rare disorder case October 22, 2025
- Deal reached in US legal dispute over approved Firdapse generic September 16, 2025
- Updated guidelines urge LEMS testing for lung cancer patients August 19, 2025
- Firdapse boosts muscle strength in Japanese adults with LEMS: Study July 15, 2025
- Man’s reflex abnormality leads to diagnosis, treatment of LEMS June 17, 2025
- LEMS diagnosed in woman with other autoimmune conditions May 20, 2025
- Rare case of LEMS associated with cancer of the esophagus reported April 15, 2025
