Cheering On Those Running the Same Race as Us
Living with Lambert-Eaton myasthenic syndrome (LEMS) or another rare disease, or caring for someone with one, comes with many challenges. We often find ourselves within a vacuum because that very rareness makes information sparse.
Finding others with the same illness and connecting with them are key to not only gaining information about the disease, but also learning its varying trajectories. When our then-14-year-old daughter, Grace, was diagnosed with LEMS, I was overwhelmed and didn’t know where to turn for answers.
Grace was the first LEMS patient her pediatric neuromuscular specialist had ever treated. He humbly enlisted Mayo Clinic doctors to come to the children’s hospital and confirm his diagnosis because he wasn’t familiar enough with the disease. As her parents, we had never heard of LEMS, and we certainly didn’t know anyone with it. We were flying blind.
All of those factors led to an increased feeling of trepidation in knowing how to move forward with Grace’s best interests in mind.
Once we connected with others living with LEMS, we found a lifeline of friendship and a wealth of information. The challenge, especially at the beginning of our journey, was trying to get a picture of what this disease looks like from day to day. I had an unquenchable thirst to know, “What does living with LEMS look like? What will Grace’s future be like?”
We knew what LEMS looked like in our home. For Grace, it was barely supporting herself to walk on her own. It was buying a walker and then a wheelchair. She quickly lost the ability to play sports or use the stairs. Some LEMS patients I connected with seemed to be in about the same place as Grace.
Yet I found some were much more mobile than Grace. I was so excited to see a video of one boy running around a track while living with LEMS. That video brought tears to my eyes. More recently, I connected with another mom whose son plays football with LEMS. Some ride bikes for miles a day, others hike, and many work full-time jobs.
Each of these stories brought mixed emotions. On one hand, I was thrilled to hear how well so many were doing while living with LEMS. It encouraged me to know there were others out there able to thrive and run, hike, play, and enjoy life. These stories gave me hope that Grace could one day restore more activity in her life.
But at times, I would get discouraged and wonder, “Why can’t Grace do these things? Are we not pushing her enough to restore muscle strength? What formula am I missing to get her to that point?”
Over time, I came to understand that Grace’s story is her own. It will not look like anyone else’s. This disease has a mind of its own, and it plays out differently and to varying degrees in each one it touches.
It’s thrilling to hear the success stories of those living with LEMS. We champion fellow LEMS friends who are doing so well. It gives us hope and encouragement that improvements can still be had in Grace’s life and physical capabilities.
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 myasthenia syndrome.