Tulsa teenager diagnosed with rare disease; asking for help funding dental surgery

A Tulsa family is asking for help raising money for dental surgery for a teenager recently diagnosed with a rare condition.

Meadow Hill has Ehlers-Danlos Syndrome.

WHAT IS EHLERS-DANLOS SYNDROME?

According to the Ehlers-Danlos Society, Ehlers-Danlos Syndrome (EDS) is a group of 13 heritable connective tissue disorders.

The Ehlers-Danlos Society says each type of EDS is caused by variants in specific genes that provide instructions for making collagens and proteins.

The Ehlers-Danlos Society says there are different symptoms for different types, but some symptoms people have in common are joint hypermobility, pain, and fatigue.

Experts say people with EDS might also have more stretchy, fragile, and velvety skin.

Experts say about 1 in 5,000 people have EDS.

MEADOW’S EXPERIENCE

Hill is a Tulsa teenager who says the problems started with scoliosis and snowballed from there.

"It started getting to the point where I couldn't do things other kids could do,” said Hill. “It got to the point, I couldn't run. I couldn't do all these things I used to be able to do."

Hill has had dental problems for several years because of EDS and doctors say it’s going to cost more than $20,000 to fix.

"It's hard for me to look in the mirror,” said Hill. “Seeing my teeth and knowing what's going to happen is scary. I'm scared of the pain, especially when learning to talk and eat again, which can take three months."

Meadow has started a social media account to spread awareness of EDS and what the future holds.

"Don't push it off,” said Hill. “There's some things that you can't see. It's like with Ehlers-Danlos and invisible disability, you can't physically see it. It's something that's internal. So even though it might seem like nothing, it could be something really big."

PARENT DIAGNOSIS

Roy Hill, Meadow’s father, says genetic testing led to even more of a rare conclusion.

Both Hill and his wife had undiagnosed EDS.

"Knowing that you gave your child something you weren't expecting, you didn't know you have, that's kind of strain in itself,” said Hill.

Hill says it took years to get Meadow diagnosed with EDS.

"It was a puzzle that we couldn't see because the pieces were too far apart,” said Hill. “You deal with one issue at a time. You deal with hips hurting, so you go talk to a hip specialist. The hip specialist doesn't ask you, 'Do you have all of these other symptoms?'"

Hill wishes EDS was talked about more and that people would spread awareness.

"I'm not mad at any doctors, I'm not mad at any dentists, it's just something that's underdiagnosed,” said Hill.

HOW TO DONATE

The Hill family has set up the following GoFundMe link for people looking to donate to Meadow’s dental care.