The motto 14-year-old Adaline follows is to live life to the fullest. “That’s what I try to do with every activity I have the ability to do,” she says. Adaline’s courage grew over the years, beginning in infancy when her parents noticed skin tightness and limited mobility in her hips.
While living in Colorado, Adaline was diagnosed with stiff skin syndrome, a rare condition in which hard, thick skin forms on various parts of the body. This condition causes joint stiffness and limited range of motion. According to the National Institutes of Health Genetic and Rare Diseases Information Center, less than 1,000 people in the U.S. have this condition.
When Adaline and her family moved to Texas, they were referred to Scottish Rite for Children. Adaline began receiving treatment from pediatric rheumatologist Julie M. Fuller, M.D. She has used various immunosuppressive medications, like injections, to soften her skin.
Stiff skin syndrome causes flexion contractures, or joints that get stuck in bent positions. Adaline’s condition requires a team approach to treat her multiple contractures. In addition to Dr. Fuller, Director of the Center for Excellence in Foot Anthony I. Riccio, M.D, and Medical Director of Movement Science Lane Wimberly, M.D., work together to manage the multiple contractures in Adaline’s hips and feet.
“My favorite part about Scottish Rite is the continuity of care,” says Mary, Adaline’s mother. “Adaline is surrounded by an amazing care team, friends and family who are all there to help her achieve her goals. People truly care at Scottish Rite.”
With the new school year underway, Adaline will begin her role as an athletic trainer for her high school’s sports teams. She looks forward to learning more about the medical field, an interest enhanced by her treatment. “Scottish Rite holds a special place in my heart,” Adaline says. “This place makes sure every kid receives amazing care, opportunities and kindness.”
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