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It’s not everyday I get to go to a conference, let alone one that features a guest performer like Mandy Harvey. For free, nonetheless. It still seems unbelievable to me that I sat in a room with so few people and got the pleasure and honor of getting to see Mandy Harvey speak and perform in person.
If you aren’t familiar with Mandy Harvey’s name, you might remember her better as the beautiful, young, profoundly deaf woman with Ehlers-Danlos Syndrome who performed on America’s Got Talent last year. If you saw her performance, you know Mandy is a very gifted and spirited woman with a passion for spreading awareness of EDS.
I have to admit I didn’t recognize her when I saw her name on the line-up, but when one of the other attendees mentioned her performance on AGT, I know who she was right away. I had no idea how much I would enjoy listening to her story and her music.
At the conference, Mandy was interviewed by John Ferman. During her interview, she talks about her AGT experience, her hearing loss in college that forced her to end her music education abruptly and a little about balancing the hectic life of travel with having a collagen disorder:
Of course the real treat was hearing Mandy perform in person. I was so grateful that I had the spoons that day and that the conference was only an hour from my home. It feels like dumb luck that I got to see her, but it was anticipating her performance that got me through the day and helped me to meet so many other people with Ehlers-Danlos Syndrome doing the invaluable work of raising awareness, providing patient education, supporting other patients and increasing knowledge of our conditions with medical professionals.
Mandy’s performance was well worth the wait. The only thing that gives away Mandy’s hearing loss when she plays and sings is how you “clap” for her, for her voice is as pure and perfect as anyone I have ever heard. She is a true testament to perseverance. I thought about this as I heard her pure angelic tones and how tragic it would have been if she had given up in college when they told her she could no longer study music.
We should all be like Mandy Harvey; never allowing anyone to determine what we can do but ourselves. Just listen to the results:
Of course, I’d be remiss if I didn’t mention all of the great things I learned at the Lead EDS conference to enable me to be a better community member, ready to serve and assist other zebras while protecting myself and the Zebra Pit. I learned a great deal and got to meet some people I’ve admired a long time, most of whom were presenters. To view these presentations, visit the Lead EDS Site.
Love Mandy’s music and mission as much as I do? The best way to support a performer is to buy their music:
In the UK, you can view all of Mandy’s available music on Amazon UK