Columns

How the LEMS Community Inspires Others by Giving Back

My husband says traveling is in his blood. He grew up overseas, so it was only natural that we would often travel to his “home” early on in our marriage. When we started having kids, we learned all the tricks of traveling with toddlers. Thanks to the U.S. Navy, we…

Coping With Surprises in Life With a Rare Disease

I don’t like surprises. Almost every Christmas, my husband and I end up sharing what we bought for each other long before we find the gifts under the Christmas tree. Along the same lines, I would much rather plan for and anticipate a vacation than be surprised with one. So…

How to Stay Safe Despite Physical Limitations

When my daughter Grace was 10, she requested a taser for Christmas. I’m not sure what prompted this request or why she felt the need for one. Regardless, she did not find a taser under the Christmas tree that year. However, as she grew into a young teen, Grace continued…

While You’re Being Thankful, Make Sure to Laugh a Little, Too

Traditionally, November is when we give thanks. With Canada and the U.S. celebrating Thanksgiving in October and November, respectively, it’s a season when many of us turn our attention to gratitude. That’s even true for us in the rare disease community. We face many hurdles throughout the year; life with…

How EMG Testing Helped Confirm My Daughter’s LEMS Diagnosis

Last week, I wrote about the unexpected surprise of hearing Lambert-Eaton myasthenic syndrome (LEMS) mentioned on television. In that episode of “The Resident,” a majority of the dialogue centered around the decision to perform an electromyography (EMG) test in order to correctly diagnose a patient. As Lambert-Eaton…

Hearing Lambert-Eaton Myasthenic Syndrome on TV Was a Surprise

It always amazes me when I hear Lambert-Eaton myasthenic syndrome (LEMS) mentioned somewhere outside of our daughter’s neurologist’s office. Most people have never heard of this particular disease. Oftentimes when I’m asked what illness my daughter has, I can’t get “Lambert-Eaton myasthenic syndrome” out of my mouth before…