Teen with Ehlers-Danlos Syndrome Defies Disease to Dance “En Pointe”
December 31, 2013
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.
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