Why it makes a difference to meet others with LEMS in person

Our daughter Grace is more than three years out from her diagnosis of Lambert-Eaton myasthenic syndrome (LEMS). Until now, we’ve never met anyone in person who has LEMS. We’ve had wonderful friendships develop through Facebook groups, Bionews forums, Zoom town halls, and phone calls. But it’s not the same as a live meeting with a LEMS patient.

Last week, for the first time, Grace was able to meet and spend time with two other people with LEMS. What a complete joy it was to meet them.

We were honored to be invited to represent the Lambert-Eaton LEMS Family Association at the Muscular Dystrophy Association’s MDA Clinical & Scientific Conference in Dallas. We knew these two other LEMS patients would also be there to spread awareness about the disease.

It was so encouraging to hear them talk with Grace. I knew they could understand the struggles she goes through. It warmed my heart to hear her say, “Yeah, I have that problem, too.” She’d never been able to say that or talk face to face about other aspects of LEMS to anyone with the disease. It helped her realize there are others just like her.

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We’re not alone

Being a teenager with such an unknown and rare disease can be a lonely journey. These men showed her that she’s not alone. Grace thought it was great when each of them pulled out their pillboxes around midday, just as she does. She loved being able to see how they walk, which encouraged her to think that her own gait could continue to improve. She saw men who didn’t let this disease keep them at home. Instead, she saw them push through their physical struggles to accomplish their goals and live a full life.

There’s just something profoundly comforting to know you’re not alone — or in my case, to know my daughter is not alone. As a mother, I was so encouraged to know this LEMS community is able to support Grace in a way I can’t. Even though I try, I don’t completely understand what she goes through, or what it physically feels like to live with LEMS. Only fellow LEMS patients can completely understand.

Those living with LEMS cope with some serious struggles. I’ve written about intentionally finding the blessings that come with living with the disease because the struggles are real and at times overwhelming. Grace and I would agree that meeting these two new friends has been one of the best highlights of her time with LEMS.

I’d highly recommend seeking out the opportunity to meet with someone else in your part of the world who deals with LEMS as you do!

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.