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news News Tuesday, January 7, 2020 Tuesday, January 7, 2020 1:23 PM - Tuesday, January 7, 2020 1:23 PM

Sisters with rare bone condition find embroidery hobby is great therapy

Sisters with rare bone condition find embroidery hobby is great therapy

Twin sisters Katelyn and Aubrey, 18, were born with multiple hereditary exostoses (osteochondromas). This rare condition causes bone tumors to grow from the growth plates of long bones. The sisters have tumors on their arms, legs, ribs, fingers and hips. The tumors deplete nutrients and affect growth. The tumors also cause pulled muscles, dislocated bones and bowing. In addition, they stunt bone growth, cut off circulation and can make movement difficult. “The funny part about this disability,” said Aubrey, “is that we look perfectly normal except that we might be in a wheelchair or have an arm brace.”

After some corrective surgeries at Shriners Hospitals for Children — Salt Lake City, Katelyn’s left arm bowed from the added weight of using crutches. It was later discovered that her left ulna had not grown fully. She stopped using her arm due to the pain and her hand started to cramp from disuse.

An unexpected solution

When their older sister taught them how to embroider, Katelyn fell in love with the process. “Suddenly, my cramped hand loosened and I didn't feel as much pain in my arm,” said Katelyn. “Aubrey fell away from the process and I kept going! My sister Megan would draw on fabric and I would embroider it.”

The girls loved to write stories with intricate characters and Katelyn soon started to embroider the characters from her stories. “It was a way of expressing how detailed I am with these characters,” said Katelyn. “Every character was so different. Their stories were filled with mystery, action, romance and historical cultures. I had embroidered over 60 different characters before teaching Aubrey all my techniques so she could embroider all her characters.”

Aubrey also had cramped fingers, wrists and arms, but for her, the thought of embroidering seemed like it might make things worse. Over the years, as she saw how much of a difference it was making for her sister, she thought it would be worth giving it another try. “I wasn’t the best embroideress, but it helped calm my nerves and exercises my hand like one giant muscle.” Though she was skeptical that the activity would help her cramped fingers, she was pleasantly surprised to find that embroidery had a soothing affect as it increased circulation in her fingers.

Seeing an occupational therapist

Though Katelyn’s hand was loosening up, her arm was still bowed and she was unable to open doors with her left hand. She came in to see Shriners Hospitals for Children occupational therapist Roxann Beaureguard, OT. When Roxann learned about how the sisters had found a meaningful way to help with the pain and stiffness in their hands, she was impressed at their ability to do a form of occupational therapy at home. “The primary goal of occupational therapy is to help a person participate in activities that are meaningful in order to facilitate their health and well-being,” said Roxann. "As Katelyn and Aubrey embroider, they not only have less pain, but they feel a tremendous sense of accomplishment, fulfillment and joy!”

Roxann gave Katelyn a large brace that fit around her elbow to wear at night and a different brace shaped like a spring to wear during the day. After a few months, Katelyn’s arm straightened and she was able to pick up heavy books and open doors. Katelyn is particularly excited that she experiences less pain in her arm and no longer needs surgery.

Katelyn says embroidery is very helpful. “During our recovery processes we would just pull out the embroidery and finish in days, weeks, months,” said Katelyn. “If you can't exercise your body, you can exercise your brain!”

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