A Tulsa teenager, Meadow Hill, has been diagnosed with Ehlers-Danlos Syndrome (EDS), a rare connective tissue disorder that can lead to severe dental problems. Hill is now seeking fundraising assistance for a dental surgery that doctors say is essential for her condition.
What is Ehlers-Danlos Syndrome?
Ehlers-Danlos Syndrome is a group of 13 inherited connective tissue disorders, according to the Ehlers-Danlos Society. It affects collagen and proteins in the body, leading to a variety of symptoms including joint hypermobility, pain, fatigue, and skin that may be more stretchy, fragile, and velvety. Around 1 in 5,000 people are affected by this syndrome.
Meadow’s Struggles
Meadow Hill, a teenager from Tulsa, first experienced health issues related to EDS with scoliosis. Her condition progressively worsened, limiting her ability to do things that other children could easily manage.
“It started getting to the point where I couldn’t do things other kids could do,” said Hill. “It got to the point where I couldn’t run. I couldn’t do all these things I used to be able to do.”
Dental problems have plagued Meadow for several years due to the effects of EDS. Her doctors estimate that it will cost over $20,000 to address the dental issues she is facing.
“It’s hard for me to look in the mirror,” Meadow confessed. “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.”
To spread awareness about her condition, Meadow has created a social media account to educate others about EDS and its impact.
“Don’t push it off,” said Hill. “There’s some things that you can’t see. It’s like with Ehlers-Danlos, it’s an invisible disability. You can’t physically see it. It’s something internal. So even though it might seem like nothing, it could be something really big.”
Family’s Genetic Connection
Roy Hill, Meadow’s father, revealed that genetic testing led to the discovery that both he and his wife had undiagnosed EDS.
“Knowing that you gave your child something you weren’t expecting, you didn’t know you had, that’s a strain in itself,” said Hill.
The family’s struggle to receive a diagnosis for Meadow was prolonged.
“It was a puzzle that we couldn’t see because the pieces were too far apart,” Hill explained. “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?'”
Roy Hill hopes more awareness can be raised about EDS, as it remains underdiagnosed.
“I’m not mad at any doctors, I’m not mad at any dentists, it’s just something that’s underdiagnosed,” he said.
The family is now working to raise the necessary funds for Meadow’s surgery and raise awareness about the impact of Ehlers-Danlos Syndrome.
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