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When a Woman With My Chronic Illness Was Featured on 'America's Got Talent'

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Last night “America’s Got Talent” shared with the nation an inspiring story of a young singer. A 29-year-old woman named Mandy Harvey took the stage and blew the judges away with her story and profound talent. Before she played her song, she explained to the judges that despite being deaf due to a connective tissue disorder, she has managed to make a name for herself in music.

• What is Ehlers-Danlos Syndrome?
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This story hit me harder than most other viewers. Not only did I sit at home watching with a connective tissue disorder (I have hypermobile Ehlers-Danlos syndrome), but I also was watching as an EDSer with almost complete hearing loss.

Ehlers-Danlos syndrome is a very complex condition. This syndrome affects the formation of healthy collagen, and collagen makes up half of your body. This condition not only causes bendy joints or stretchy skin, but it causes complex issues in multiple systems of the body. Not many people realize that connective tissue disorders like EDS can cause issues such as hearing loss, but Mandy stood up on that stage and told the world the truth about connective tissue disorder. She told her story and shared her love of music in a beautiful way.

I sit here writing this article blaring music, trying to hear the beat. All day I have been reading lips and asking people to repeat themselves as I honestly can barely hear anything. While my hearing loss is caused by buildups in my ear rather than nerve damage, Mandy’s story hit home. Her song and story made me feel less alone on a day when I felt like an outsider.

Hearing loss is hard to deal with. Whether it is permanent or temporary, not being able to hear what people say is nearly impossible. I was fortunate enough to have learned how to read lips in the Sign Language Club that I started at my school, but most people do not have this useful skill. Even being able to read lips, I still miss a lot. I miss small words, side conversations, and most music. It is so incredibly frustrating to go around the world only catching half of everything that people say. For this reason, I am so incredibly grateful to hear about people like Mandy who have overcome hearing loss.

Thank you, Mandy, for being brave enough to share your story on national television last night. It is people like you who give all of us with connective tissue disorders the strength to push through another day. Your story reminded everyone that it is a complex condition. It’s not all dislocations and bruising, but there are also other issues such as hearing loss. Thank you for bringing awareness to our condition, spreading your music with the world, and showing everyone that they can overcome any challenge.

Originally published: June 7, 2017
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