Note: This column describes the author’s own experiences with IVIG therapy. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Our family learned the gravity of words when our daughter Grace was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS)…
We are all on a journey in this rare disease world. Whether we have Lambert-Eaton myasthenic syndrome (LEMS) or care for a loved one who does, our lives have been touched by the debilitating and oftentimes life-changing symptoms brought on by this rare disease. Those in our community…
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…
We’ve all been there. Our doctors suggest a new treatment for our rare disease, and after consulting with other patients through social media, we decide that the option is too scary. I did this with intravenous immunoglobulin (IVIG) replacement therapy. For more than a year, I held my neurologist…
Get regular updates to your inbox.