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The First Time I Met Someone With My Mother's Diagnosis, Myotonic Muscular Dystrophy

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Darcy the author holding her baby brother Dustin for the first time in the hospital

One of the most meaningful parts for me in writing my book From My Mother was meeting others like my family. Before researching for From My Mother, I had never met another woman affected by adult onset myotonic muscular dystrophy (MMD) like my mother. The first time I did came the year after my mother passed away. I wrote an article for the national muscular dystrophy-related Quest Magazine, and one of the readers contacted me on Facebook after commenting on the article. She was a mother whose child was recently diagnosed with the disease. When she added me on Facebook, I looked through her pictures and gasped, “Oh my God, her facial structure looks just like my mother’s. She must carry the gene.”

We dialogued on Facebook. The doctors who recently diagnosed her son had never dealt with the disorder prior to him. They didn’t know. She asked how doctors knew my mother was the carrier. I told her the doctor shook my mother’s hand and mom couldn’t release the grip completely on her own. Myotonia, or in this case, trouble fully releasing muscles after gripping, can be a symptom of myotonic dystrophy in adults. She told me a doctor shook her hand and told her to see a specialist who might be able to tell her more. I was in awe of the situation, and I hoped down the road that she would find others like herself who would understand. I hoped she would have someone to talk to that knew.

Since then, I have found and joined numerous online support and awareness groups for MMD. Even now I find comfort in talking to others who know what it’s like, even as the one in the family without the disorder. I can’t imagine the benefits my mother would have had if she knew how to find others like her online to share stories with. She lived in a town of 4,000 people, and no one there really understood. The Internet would have been her only link to another woman like her. She didn’t know how to find those links though, so today I want to share a list in case it helps any others like her. Most of these are closed groups, so you will find only people who want to and have a reason to be there:

Myotonic Dystrophy Support and Information

Congential Myotonic Muscular Dystrophy Network

Myotonic Dystrophy (All Types)

Myotonic Dystrophy Awareness in Canada

There are also some cause pages or pages families affected by MMD build awareness with, like these:

Congenital Myotonic Dystrophy Fight Fund

Standing Strong for Spencer

At the risk of sounding odd, I find great comfort in seeing pictures on Facebook of families like mine. I love watching videos of Spencer because he reminds me of my brother. It fills my heart with joy to see Spencer’s joy. I reminisce on the beauty of having someone so pure and beautiful as a young child with MMD, and it helps balance the pain of loss to remember the good. I don’t love the disease, but I’ve felt love for more than just two people with the disease thanks to Facebook and these connections. It helps us know we are not alone.

The Mighty is asking the following: Write the article you wish you’d found the first time you Googled your or a loved one’s diagnosis. If you’d like to participate, please send a blog post to Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Originally published: April 23, 2016
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