Sarah Sutton glides across the floor as if dancing is a natural act for her. It is anything but.

With extreme care, Sarah steps up on her toes to dance en pointe ballet being careful to keep her knees directly over her shoes. If not, her knees will bow to the back tearing her joints.

Sarah, 16, has Ehlers-Danlos Syndrome making her hyper-mobile. EDS is caused by a defect in the synthesis of collagen in specific genes. There is no cure, and treatment for Sarah includes occupational and physical therapy.

“She was a very floppy baby, but doctors said she was fine,” said Robin Sutton, Sarah’s mother. “But I could tell she was different. It became obvious when she entered preschool that she was much weaker than other kids.”

Sutton took her daughter to a developmental pediatrician who discovered Sarah had a connective tissue problem. By age 8, Sarah had seen countless doctors when a cardiologist said she had a heart condition with an enlarged aortic root. When she was 12, a geneticist confirmed Sarah had EDS-A-Typical Presentation.

For Sarah, the real treatment is for symptoms since there is no cure. Her entire internal system is held in place by connective tissues since her joints do not function properly. She keeps her tissue strong through swimming on a competitive team at Copperas Cove High School and through physical therapy including dancing ballet.

“I can always feel the inside of my joints and I am always in pain,” Sarah said. “I just don’t express it.”

Sarah experiences multiple subluxations where her bones slide partially in and out of her joints making dislocation the major fear. Recently, Sarah spent two months in physical therapy for a dislocated shoulder when X-rays revealed torn joints. Kinesiology tape was used to secure her shoulder in place so she could continue to dance and receive physical therapy for the remainder of her body.

“Getting her to this point is huge. We never thought she would be able to dance,” Sutton said. “Her muscles have to compensate to keep the joints in. Dancing and exercise keep her muscles strong. Without strong muscles, she would be like a noodle.”

Sarah’s dance teacher has the same expectations of her as she does all of her students.

“I don’t see Sarah as having a disability. So I don’t worry about having to be careful with her,” said instructor Reneé Gillenwater, owner of Newcomb School of Dance where Sarah has danced since she was 5. “She has worked so hard to be as strong as every other dancer in the company.”

To keep her muscles strong, Sarah practices ballet two hours a day, four times a week, and spends 10 to 12 hours a week in the water. The 4.2 GPA student hopes to attend college on a dance scholarship.

“Sarah will have to live with this her whole life,” Sutton said. “She’ll have to decide if she’ll have children knowing there is a 50 percent chance her kids will have EDS.”

But for now, Sarah is following her dream and volunteering with a children’s therapy dance group every Wednesday.

“I just want to keep on dancing,” Sarah said.

Read more at the original source here.

3 thoughts on “Teen with Ehlers-Danlos Syndrome Defies Disease to Dance “En Pointe””

  1. Erin says:

    Reading this story is like reading my daughter’s life story. She is an edser who is also a dancer. She right now is on the couch because of recent knee surgery 3 weeks ago. She is in PT and while she is not yet weight baring she is working hard to get back in her pointe shoes. You go Sarah…keep dancing…

  2. Fiona says:

    Inspiring young woman! My daughter has a similar story – EDS and dance. She recently got accepted into the dance program at an arts High School and I’ll admit that I’m nervous that between the dancing at school (ballet and modern) and the dancing at home (highland) she’s going to cause more injuries. She already dances with ankles braces/athletic tape.
    I wish Sarah the best of luck with her future! The determination that it takes to be a dancer with EDS will be a bonus to her in college and beyond.

  3. Lydia Gosner says:

    I was diagnosed with hyper mobile Ehlers Danlos today. They told me at The Children’s Hospital Of Philadelphia that I couldn’t go on pointe. I am not ready to be on pointe no where close but, I didn’t want it to define my dancing skills. I am really stuck on what to do.

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