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Go Ahead, Ask: Neurofibromatosis Patient Invites Questions, Makes Friends

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To those he meets, Reggie Bibbs has but one request. Just ask.

A Houston-based, internationally known activist, Bibbs has neurofibromatosis type 1 (NF 1), a genetic disorder that ranges in severity from almost imperceptible to major. 
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As such disorders go, NF 1 is common, occurring in about 1 in 3,000 births. The two other forms of NF -- neurofibromatosis 2 and schwannomatosis -- are much more rare.

Bibbs' case is severe. The left side of his body is greatly affected, from tumors on his face to a distinct curvature in his leg.

He was diagnosed at the age of 8 months after his mother took him to Shriner's Hospital when she became concerned about a growth on his eye and another on the sole of his foot.

She discovered that she had a mild form of the disease, which she had unknowingly passed on to four of her five children. NF is an autosomal dominant genetic condition, meaning it may be inherited if just one parent has it.  

Two of Bibbs' sisters have mild forms, and his brother Ronald died at age 46 when one of his tumors developed into a malignant peripheral nerve sheath tumor.
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About half the cases of NF occur spontaneously, though, says John Slopis, M.D., associate professor in the Department of Neuro-Oncology and medical director of the Neurofibromatosis Program at MD Anderson. (For more information on how the disease develops, see the link to the related story.)

For Bibbs, this early diagnosis began a lifetime of medical appointments and treatments for NF, which is chronic and debilitating. When he was 13, he "graduated" from Shriner's to MD Anderson.

Managing a range of physical and mental symptoms

Today, the Children's Cancer Hospital (CCH) at MD Anderson specializes in the care of children with neurofibromatosis, who may suffer from pediatric brain tumors, and peripheral nerve and spinal tumors.

Treatments include chemotherapy, surgery and radiation, or any combination of these. And because many pediatric patients experience learning disabilities, CCH has developed a special intervention program to assist these patients with educational support needs.

Because he's an adult, though, Bibbs receives treatment at the Neurofibromatosis Clinic, which didn't exist when he first came to the institution. It's one of the few clinics in the nation dedicated to the long-term care of NF patients. They are subject to headaches, epilepsy, spinal deformities and cardiovascular problems in addition to tumors.

Bibbs has had many surgeries and has participated in clinical trials. He sees the staff of the NF clinic at least twice a year for screenings. They watch him carefully for disease progression or worsening of symptoms and to make sure his tumors aren't becoming malignant.

Because of his facial disfigurement, for many years he went out rarely, and only to places he felt safe. Though sometimes mocked, shunned or treated cruelly as a child, he recalls that his siblings and others in the neighborhood protected him.

'Their strength helps me'
Whether you encounter Bibbs out in public, through his Neurofibromatosis Café website, or in a documentary, it's obvious that he's energetic, committed and happy.

He credits his friend Lou Congelio, a veteran Houston advertising executive, with helping him create an identity for "Just Ask," complete with a logo featuring a line drawing of Reggie's face. The site sells "Just Ask" T-shirts to raise awareness, and hundreds of fans and friends -- including celebrities -- have sent in photos of themselves wearing the shirts.

His supporters have encouraged him to make more public appearances, such as a trip to Minute Maid Park to see a Houston Astros game. He's been heartened by the warm welcomes he's received.

"I feel terrific about going out," Bibbs says. "People are excited to see me because they've seen me before." He feels he's found his calling in drawing attention and raising funds for research into this often-devastating disease, which strikes men and women of all races and backgrounds.

Because he is so tied into the NF community around the world -- not just NF patients, but those whose research and practice focus on the disease -- Bibbs is hopeful about the future for those with NF.

"I often wondered why I was born with NF," he says. "But if I didn't have it, there would still be others with it. Their strength helps me. I count it a blessing to know them. "I just don't know what else I'd be doing."

Related story:
Q&A: Neurofibromatosis and Its Relationship to Cancer
Neurofibromatosis is common, yet baffling, occurring in about one in 2,500 live births, but with symptoms that vary from minimal to profound and debilitating Dr. Slopis answers frequently asked questions.



1 Comment

I'm proud to call Reggie my friend. His strength is contagious. His work, inspiring.

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