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
Watch the interview: