LEMS community makes strides in spreading disease awareness

An organization and its registry aim to add information for researchers

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by Lori Dunham |

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“Life was like a box of chocolates. You never know what you’re gonna get.” — Forrest Gump, in the film of the same name

Most would agree that life can be unpredictable. Our family certainly didn’t expect that our daughter Grace would face the onset and diagnosis of Lambert-Eaton myasthenic syndrome (LEMS) when she was 15. I’m sure you readers didn’t anticipate the LEMS invasion of your life until it came crashing down upon you, too.

We’ve all been thrust into this rare disease world unexpectedly and, often, unprepared. When Grace lost her ability to walk, it nearly broke me. Watching my child suffer is pain like I’ve never experienced. All at once, we were dealing with Grace’s physical issues as well as her emotions and subsequent depression, all while trying to process our own feelings.

This road has been a hard one to walk, especially during the diagnosis stage. One of the greatest blessings for me during the hardest of times was finding the LEMS community through Facebook groups and the Lambert-Eaton News Forums.

What started out as a scary, lonely journey soon revealed a beautiful community, one where members helped each other, advocated for the overall group, and shared much-needed information.

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Of course, LEMS affects a very small population because it’s such a rare disease. Because of that, some would consider our cause unworthy of time, research, and money. I adamantly disagree.

One child with the disease is all we need to justify the time and money to make the child’s life better. One person’s livelihood affected by LEMS is all we need to be worth the medical field’s time.

An organization aims to help

That’s why I’m thrilled to see proactive LEMS patients advocating for themselves and their community by starting the Lambert-Eaton LEMS Family Association. This nonprofit, which was incorporated last year, exists to increase LEMS awareness in the medical, research, academic, and general public communities. I’m privileged to serve on the board.

In partnership with the Coordination of Rare Diseases at Sanford (CoRDS), a centralized and international patient registry of Sanford Research, the Lambert-Eaton LEMS Family Association has started a registry of LEMS patients. It hopes that the data it collects will accelerate the development of more effective treatments and earlier, more accurate LEMS diagnoses.

The registry further hopes to drive research forward by providing much-needed information to doctors and others studying the disease.

Each participant is assigned a Global Unique Identifier, which “enables de-identification of the data when shared with approved researchers,” according to the association’s website. This move protects privacy by preventing participants’ names and other identifying information from being passed on.

If you’ve yet to add your information to the LEMS patient registry, I encourage you to visit the association’s website to learn more about how the community benefits from a comprehensive collection of data.

I’m encouraged to see LEMS patients who desire to make life better for those who come after them. The Lambert-Eaton LEMS Family Association and its patient registry with CoRDS are huge steps forward in improving life for those living with LEMS today and for generations to come.

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.


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