Haley was undiagnosed with a rare illness from ages 9-21. At age 7, Haley had a bicycle accident that caused some trauma to her brain. Two years later she started experiencing neurological symptoms of something being wrong. Haley experienced a lot of headaches, neck pain, back pain, plus nausea and vomiting. She had test after test and they came back negative and medications weren’t helping.
Finally at age 21 she saw a doctor in MD who diagnosed her with a rare condition called Ehlers-Danlos Syndrome (EDS). It is a connective tissue disease and collagen disorder that basically makes everything in her body very flexible and stretchy. In addition, her Arnold Chiari Malformation needed to be addressed through surgery. Basically her brain was descending through her skull causing her to faint and have constant nausea.
The biggest difficulty with this disease is that it’s invisible and it’s only managed by continual treatment of symptoms. On the outside Haley looks normal, but her symptoms persist. Haley’s unique story sheds light onto this rare condition and how it’s impacted every aspect of her life.
Location: Harrisonburg, Virginia, United States
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Notable quotes from the interview:
I always say, I don’t remember what it’s like to not be in pain. I don’t know how to live without being sick, it’s kind of a weird thing, it’s all I can remember.
I missed all of my 4th grade year, half of my 6th, half of my 8th, all of my 9th, all of my 11th, and half of my 12th. I graduated on time miraculously.
When I was finally able to move into an apartment, it was wonderful, and I love my parents, and they’re only two point seven miles away, so, we’re good. It was like a sign of my independence.
I’m a leader for the College and Career Fellowship–CCF is what we call it–and, but it’s kind of like the College Sunday School, if you will. And we have events a lot of times like ultimate frisbee, or volleyball, and things that I can’t do.
My best friend and I had been planning a trip to Dollywood like since eighth grade. And we got to go, and it was so hard. I didn’t expect that, just the walking was incredibly difficult, and my body just, just couldn’t handle it, and it was really sad… and rollercoasters I can’t go on… because of my brain and my neck.
Yeah, and there are things like I have a feeding tube in my stomach, and I have what’s called a Hickman, which is like a large IV that goes into the ventricles of my heart, that I can take medications through, um so you know, if my group of friends will sometimes go to a lake or something. I can’t do it. I can get those things wet.
I do find that it’s a constant battle of what’s gonna be best for me emotionally and what’s gonna be best for me physically. So sometimes, I have to say no because I can’t do it physically, but other times I need to be with my friends, and I need to be with people that it’s worth the risk of the physical distress that it may cause to be with them doing whatever activity they may be doing.
I love to sing and dance. Okay, not dance actually. Just to sing. I like to try to dance. But I I love musical theater and it’s kind of difficult because it’s maybe one of the worst things I could love with this illness. Cuz it’s gonna be… it would be very difficult to to do any kind of musical theater um with this illness. But, I do love it, and I I enjoy singing like at weddings or in church. It just brings a real joy. Um I’ve always had a connection to music.