FRESNO COUNTY, Calif. (FOX26) — After years of being misdiagnosed, Central Valley native Aly Corvin finally has a name for the pain that has shaped her entire life.

“I was born with a handful of disabilities and I’ve acquired some on the way,” Corvin says. “But I do have what a lot of people call E-D-S and CO.”

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.

My hips, my joints, my shoulders, my knees, ribs, all come out of socket, daily

Explains Corvin.

Due to her rare condition, Corvin has to use a wheelchair anytime she is outside of her home.

“Outside of my home, I absolutely have to have my chair at minimum with me,” she says. “There are a few other times where I will stand out of my chair, however, those are because if I don’t use it, I’ll lose it. If you do not use your muscles, you get atrophy.”

But even within the limits of her disability, Corvin has built a career defined by movement.

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.

Still, one barrier continues to stand in the way of her independence: her wheelchair. Corvin’s current chair is nowhere near a correct fit.

“It’s built for someone who’s 4’10”, and I’m 5’7,” says Corvin. “Which essentially would be like if you tried to shove your foot into a shoe that’s three sizes too small.”

A chair that’s the wrong size doesn’t just cause discomfort, it also causes damage.

I also have something called kyphosis, which is a curvature of the lower spine. A properly fitted wheelchair would help alleviate the pressure that’s being put on my spine

says Corvin.

Insurance, however, will not cover the specialized chair she needs. Without it, doctors say she could require spinal fusion surgery.

“I have a 50/50 shot at recovery for surgery,” Corvin said. “And 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.”

To avoid that outcome, and to continue dancing, training and advocating, Corvin is turning to the community.

A fundraising page is live through the nonprofit Help Hope Live.

You can help Aly continue doing what she loves at the Help Hope Live website.