Tyra Coffman knows people are going to stare at her when goes out into the world. She has lived with that fact for many years.
Coffman, 39, has neurofibromatosis (NF1), a disorder that causes tumors to grow along nerves and can also affect the development of bones and skin. The tumors, or neurofibromas, can grow anywhere on or inside the body.
NF1 occurs in about one in every 3,000 births. It is characterized by multiple cafe-au-lait pigmentation spots on the skin, particularily in the armpits and groin areas, and neurofibromas that form on or just under the skin. The disorder can also affect the formation of bone with scoliosis (curvature of the spine) often occurring in many children with NF1. Tumors of the brain, cranial nerves or spinal cord may also form. Approximately 50 percent of patients with the condition also have learning disabilities.
About half of the time, there is a family history of the disease. The rest arise from spontaneous mutations in a parent’s genes. A person with NF has a 50 percent chance of passing it to each child.
Coffman’s father, William Clifton Groce, died as a result of the disorder in 1978. He was 40.
“He had a very severe case. He ended up getting cancer and he had brain tumors,” she said.
Her father was the first member of her family who developed NF as far as Coffman knows.
Her brother, Joel Groce, also has a milder case of NF1, she said.
Coffman’s health problems have intensified as she has gotten older. She started developing neurofibromas on the trunk of her body in childhood, but the tumors have spread over her face, neck and extremities in more recent years.
She had to have surgery because the growths formed an obstruction in her digestive system.
“I lost 15 inches of my intestines and I was in the hospital for 17 days,” she said. “Within just seven or eight weeks time, I went from 123 to 103 (pounds).”
Her son, Christian, 5, also has the condition. He has cafe au lait spots and has started to get a few fibromas on his stomach and back. He has a tumor on his left optic nerve as well.
Both Coffman and her son are followed regularly by a team of doctors including neurologists and an opthalmologist. They periodically undergo MRIs, CAT scans and other tests to monitor the growth of their tumors, especially internal ones.
For those interested in contacting Coffman about forming a support or awareness group, call (270) 308-0414 or e-mail tlc125@glasgow-ky.com.
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