If you’ve been recently diagnosed with LEMS, please read this
A columnist offers reasons to hope for a brighter future with LEMS
If you’ve recently been diagnosed with Lambert-Eaton myasthenic syndrome (LEMS), you’ve come to the right place. Finding the LEMS community was life-changing for me, and I hope it will be for you, too.
People usually don’t see a rare disease diagnosis coming. It’s like a freight train barreling down upon us fast and furiously while we’re obliviously looking in the other direction. We’re suddenly overtaken by the force of it, leaving us shattered and in pieces. I remember those days well.
When our daughter Grace began showing symptoms of LEMS in 2019, at the age of 14, she deteriorated rapidly. While most of her peers were gaining independence, Grace was losing what little of it she had.
Within a month of experiencing her first symptom, Grace was in a wheelchair. She lost the ability to hold herself upright, even struggling to lift her head off the pillow. Her muscle weakness soon moved to her arms. She could no longer wash herself or comb her hair, because her arms were just too weak. Suddenly, sports, playing the piano, and just climbing the stairs to her room were impossible.
Doctors, who were uncertain how this disease would manifest in Grace’s tiny body, didn’t want to give us false hope, which was terrifying. It was a terrible time for our family, and I felt hopeless.
Then I discovered the LEMS community.
Finding hope in community
Discovering others who had the same diagnosis helped our family tremendously. It eased my loneliness, and it was comforting to find other people who understood what we were going through. It helped to know that we weren’t alone, and I could pick up the phone and talk to someone who understood life with this disease. That lightened my load significantly.
Hearing stories of other LEMS patients also helped. I learned that many of them have full-time jobs or are raising children, and they can drive, travel, and go to school. I needed to know these things were possible, because at the time, we had no idea what Grace’s life would look like down the road.
Community members also shared their experiences with various LEMS treatments that had worked for them. This reassured me that we had options. If one treatment didn’t work, we could try another. So when intravenous immunoglobulin didn’t help Grace, I didn’t despair. Instead, we returned to her doctors to discuss other options. Eventually, we found a treatment plan that worked best for her.
If you are newly diagnosed with LEMS, please don’t despair. There is hope for a better tomorrow. We live in an era of great innovation, with many advancements in scientific research. I believe we will see great strides being made in our lifetimes to benefit our community. So hold on tightly, better days are coming.
Note: Lambert-Eaton News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lambert-Eaton News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Lambert-Eaton myasthenic syndrome.
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