McCoy Penland was four years old when her mother noticed a sudden lack of energy and that her daughter was constantly itchy. It took the family three months for McCoy to be diagnosed with scleroderma. Five years later, McCoy is a good student, great soccer player and talented violinist who inspires her family to overcome any obstacles.
It was June 2011 when Tara Penland started to notice her daughter’s symptoms. She explains,”We had seen a noticeable change in her behavior. She’s been generally a happy and personable kid, and suddenly became very tired and lethargic. We noticed also that she was scratching her torso in her sleep during the night. She would try to find anywhere to scratch, even the walls. Her trunk was the first area to harden.”
The first physicians thought McCoy suffered from eczema and that constipation was causing the girl’s torso to harden. A visit to a different pediatrician who had just graduated from medical school led to the correct diagnosis. The physician recognized the symptoms of scleroderma and told McCoy’s parents to seek out Dr. Patrick Knibbe, a rheumatologist in Boise.
Three months after the first symptoms, McCoy Penland was diagnosed with juvenile diffuse systemic scleroderma (JSSc), a rare disease of the connective tissue that causes fibrosis in the skin, subcutaneous tissues, and internal organs as well as abnormalities of the vascular and immune systems occurring in children younger than 16 years old.
“McCoy has an interesting case of scleroderma. At this point, she doesn’t have Raynaud’s or internal involvement, mostly because she was diagnosed so quickly. When the symptoms were at their worst, she couldn’t stand up straight, put her hands above her head or make a fist. There was significant scarring on her trunk, back, hands and feet,” explained Tara Penland. McCoy continues to be followed by Dr. Knibbe in Boise and Dr. Anne Stephens at Seattle Children’s Hospital.
McCoy began Cytoxan chemotherapy treatment, but after a year, Dr. Stephens recommended a treatment that is usually used in adults, Rituximab. For a while, McCoy was on two different types of treatment, but it was too much for her body to handle. But because of Rituximab, McCoy’s symptoms stopped progressing. Now, she lives an active life, playing soccer and spending time with her little sister Scarlett.
“McCoy has been such a source of strength for our family. For parents of children with scleroderma, I definitely recommend asking the doctors many questions. We wouldn’t be where we are today without Dr. Knibbe or Dr. Stephens. They have been so willing to answer all our questions. When we left the doctor’s office with challenges and wanted to ease McCoy’s symptoms and pain, they helped us get her back on track to live a life of a little kid,” added Tara Penland.
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