FRESNO COUNTY, Calif. (FOX26) \u2014 After years of being misdiagnosed, Central Valley native Aly Corvin finally has a name for the pain that has shaped her entire life.<\/p>\n
\u201cI was born with a handful of disabilities and I\u2019ve acquired some on the way,\u201d Corvin says. \u201cBut I do have what a lot of people call E-D-S and CO.\u201d<\/p>\n
Corvin lives with Ehlers-Danlos syndrome, a group of rare connective tissue disorders caused by faulty collagen. The condition leads to overly stretchy skin, fragile tissues and hypermobile joints that dislocate easily: something Corvin experiences every day.<\/p>\n
My hips, my joints, my shoulders, my knees, ribs, all come out of socket, daily<\/p>\n
Explains Corvin.<\/p>\n
Due to her rare condition, Corvin has to use a wheelchair anytime she is outside of her home.<\/p>\n
\u201cOutside of my home, I absolutely have to have my chair at minimum with me,\u201d she says. \u201cThere are a few other times where I will stand out of my chair, however, those are because if I don’t use it, I\u2019ll lose it. If you do not use your muscles, you get atrophy.\u201d<\/p>\n
But even within the limits of her disability, Corvin has built a career defined by movement. <\/p>\n
She is a professional dancer, adaptive athlete, and most recently, Ms. Wheelchair California. Her social media presence, filled with dance videos, adaptive workouts and disability advocacy, has earned her more than 16,000 followers, and even the attention of Apple, which featured her in a recent campaign.<\/p>\n
Still, one barrier continues to stand in the way of her independence: her wheelchair. Corvin\u2019s current chair is nowhere near a correct fit. <\/p>\n
\u201cIt\u2019s built for someone who\u2019s 4\u201910\u201d, and I’m 5\u20197,\u201d says Corvin. \u201cWhich essentially would be like if you tried to shove your foot into a shoe that\u2019s three sizes too small.\u201d<\/p>\n
A chair that\u2019s the wrong size doesn\u2019t just cause discomfort, it also causes damage.<\/p>\n
I also have something called kyphosis, which is a curvature of the lower spine. A properly fitted wheelchair would help alleviate the pressure that\u2019s being put on my spine<\/p>\n
says Corvin. <\/p>\n
Insurance, however, will not cover the specialized chair she needs. Without it, doctors say she could require spinal fusion surgery.<\/p>\n
\u201cI have a 50\/50 shot at recovery for surgery,\u201d Corvin said. \u201cAnd because I need a spinal fusion if I continue this route, I would have a 50\/50 shot of a spinal cord injury, which could lead to paralysis.\u201d<\/p>\n
To avoid that outcome, and to continue dancing, training and advocating, Corvin is turning to the community.<\/p>\n
A fundraising page is live through the nonprofit Help Hope Live.<\/p>\n