DALLAS -- A cane helps 22-year-old Amber Adair get around. If that's the only reason people stare, she's glad.
"I actually have people who come up and talk to me now," Amber said, with a smile. "They still look at me funny -- I still have tumors, I'm still different. But they will come up and talk to me."
Amber has had 16 surgeries to remove giant tumors from her hip, thigh, and other places. She has even more growing on her body as part of a disorder called neurofibromatosis, or NF.
NF involves uncontrolled growth of tumors along the nerves. Sometimes tumors grow inside the body, but often thousands grow on the outside. The inherited disease affects both sexes and races equally. NF is variable and can be progressive. It is linked to learning disabilities, high blood pressure, and can also affect the brain, bones and skin.
Dr. Edward Melmed, a plastic surgeon at Medical City Dallas, is one of perhaps only two surgeons in the country willing to remove thousands of tumors at a time. The removal procedure is complicated, and often not covered by insurance.
"They have labeled this as cosmetic surgery to remove tumors, which I find abhorrent," Dr. Melmed said. "These patients suffer. They suffer having these multiple tumors, and to be denied medical treatment is, I think, unacceptable."
NF affects about one-in-3,000 people worldwide, which makes it more prevalent than cystic fibrosis and muscular dystrophy combined. Yet few have ever heard of it, or the surgery to treat it.
"What I'm hoping is that this condition would be identified and more people would be prepared to tackle it," Dr. Melmed said.
Melmed's patients are starting a support group for those who feel isolated.
For Amber Adair and Robert Glasgow, a shared condition and similar surgery has finally given them confidence.
"Like I fit in," said Robert, who has already had tumors on his face, torso, and arms removed. Surgery on countless pea-sized growths on his back is next.
"I just feel better because I don't have all those bumps all over me," Robert said. "I feel more confident when I go someplace."
NF DALLAS SUPPORT GROUP INFORMATION
Saturday, Dec. 8 from 9:00-10:30 a.m. Join us for coffee and donuts at St. Michael and All Angels (8011 Douglas Avenue Dallas, TX, 75225) on the 2nd floor. Please RSVP by Wednesday, Dec. 5 or to Cindy Hahn at 972-868-7942