Two years ago, Kendal Yovanovich started complaining of discomfort while playing sports.
“At first we just thought she was complaining to get out of practice,” said mom, Jennifer. “She’d say her knees hurt or her ankles hurt it…When she started crying out in pain and didn’t want to play t-ball, which she loved, we knew it wasn’t typical aches and pains.”
Kendal’s parents took her to Akron Children’s Hospital for evaluation.
Dr. Kathryn Mosher, a pediatric physiatrist and director of the neuromuscular clinic at Akron Children’s, suspected Kendal had Ehlers-Danlos syndrome.
Ehlers-Danlos syndrome affects connective tissues — primarily skin, joints and blood vessel walls. Connective tissue is a complex mixture of proteins and other substances that provide strength and elasticity to the underlying structures in the body. There is no cure for Ehlers-Danlos syndrome.
Once diagnosed, Dr. Mosher oversaw Kendal’s case, which included medication and physical therapy to manage the pain and sessions with a child life specialist to learn ways to cope with the disorder.
Due to her joints having weak connective tissue, Kendal is more likely to dislocate joints doing seemingly simple childhood activities, which has been tough to accept.
“Jumping in a bouncy house or on a trampoline or even playing on the monkey bars isn’t safe for her to do any more,” said Jennifer. “It’s been really hard on her emotionally because she sees her friends doing things she used to be able to do. The child life specialist has really helped her manage her emotions.”
Kendal goes to physical therapy to strengthen the muscles around her joints to help stabilize them. She’s also learned how to make adjustments to lessen the pain.
Before diagnosis, Kendal would complain of her hand cramping or hurting in class. After meeting with her occupational therapists at Children’s, Kendal learned an easy trick to relieve the strain on her hand and fingers.
“By using a mechanical pencil Kendal can tell how hard she’s pressing because the lead will break if it was too much,” Jennifer said. “It’s a little change but it’s made a big difference.”
Gym class still poses some challenges for Kendal because of the physical nature of the class.
“The teacher knows what’s safe for her to do and Kendal knows to sit out if it’s too much,” said Jennifer. “Kendal doesn’t like to be different so she doesn’t like sitting out. She’d much rather be in there playing with everyone else.”
Kendal remains very much a part of the action – whether playing sports or playing with friends – and continues to learn ways to adapt so she doesn’t miss out on the fun.
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