The Importance of Connecting With the LEMS Community
I felt very alone when our daughter, Grace, was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS). I had no idea where to turn for help. Our family didn’t know anyone with LEMS, or any other rare disease. Her doctor had limited resources and knowledge of the condition. We were walking blindly into unknown territory, and I was afraid.
Looking back, it encourages me to remember that that period of feeling alone and helpless was short-lived. Mostly, this is the result of a beautiful community of LEMS and other rare disease patients who stood beside me and offered their advice, support, and knowledge.
I know many people have a love-hate relationship with Facebook. But it was what first connected me with other LEMS patients. After joining a LEMS Facebook group, Dawn DeBois, who wrote the “LEMme Tell Ya” column for Lambert-Eaton News, reached out to me. I really needed this lifeline.
Dawn shared her wealth of knowledge about LEMS. She also shared, with their permission, contacts for other moms of kids with the disease. I was immediately connected with families who shared stories of children and teens with LEMS and the positive results various treatments had had on their health. It was so encouraging to see other teenagers like Grace further along in their treatment. It gave me hope that her health would improve. I realized it was possible for Grace to gain back some of what she had lost due to LEMS.
After personal connections, one of the biggest sources of encouragement and support was the Lambert-Eaton News Forums. This was and continues to be a great way to talk with others in the LEMS community. Everyone is free to ask questions, offer nonmedical advice, and keep up to date with the latest trials and medical news.
The forums have begun hosting occasional Zoom meetups, since so many LEMS patients have never met another LEMS patient in person. I look forward to attending my first one on Tuesday, Sept. 14. It would be wonderful to “meet” those of you that can attend. What a privilege and honor it would be to share camaraderie and encouragement during this time.
I believe my family’s mental health and Grace’s physical well-being have benefited greatly from these various resources of connection and community. I encourage everyone affected by LEMS to tap into any available resources. Knowing we are not alone in this battle is invaluable.
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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.
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