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Go Ahead, “Just Ask”: Neurofibromatosis Patient Invites Questions, Makes Friends – M.D. Anderson Cancer Center

M.D. Anderson Cancer Center Cancerwise Feature Story By Mary Brolley on February 1, 2011 10:43 AM

Related article: “Treating Neurofibromatosis”

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.

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.

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. Categories: * Patient Stories Tags: * Cancerwise Feature Story

Related videos:

NF Symposium at MD Anderson Cancer Center

“Neurofibromatosis Type 1: Update 2010” –  Dr. John M. Slopis, M.D. Anderson Cancer Center, Texas NF Symposium, 8/7/10

“Panel discussion on neurofibromatosis with NF patients.” –  Reggie Bibbs, Andy Pagoda and Dr. John Slopis, Texas NF Symposium, 8/7/10

“Why do so many children with NF struggle in school and what can be done about it.” Dr. Bartlett Moore, M.D. Anderson Cancer Center, Texas NF Symposium, 8/7/10

NF Doctor Panel Q&A, Texas NF Symposium, M.D. Anderson Cancer Center, 8-7-10

“Surgical Strategies for Neurofibromatosis” – Dr. Ian E. McCutcheon, M.D. Anderson Cancer Center, 8/7/10

“2010 Update on Genetic Testing in NF1 and NF2.” – Dr. Shweta Dhar, Texas NF Symposium on Neurofibromatosis, M.D. Anderson Cancer Center, 8/7/10

“Current Therapies for NF1” – Dr. Laura Kleese, Pediatric Oncologist, Texas NF Symposium, M.D. Anderson Cancer Center, 8-7-10

“2010 Update on Genetic Testing in NF1 and NF2.” – Dr. Shweta Dhar, Texas NF Symposium on Neurofibromatosis, M.D. Anderson Cancer Center, 8/7/10

Related Videos

Meet Reggie Bibbs

My Brand New Face – Maurice Simpson & Reggie Bibbs, Discovery Channel Documentary

1994 NF PSA – Reggie Bibbs
ABC News Report on Neurofibromatosis and Reggie Bibbs – Christy Myers reports on one man’s crusade to raise awareness of neurofibromatosis through his website, blog, photo and video portals on the internet, and attending community events in Houston

Neurofibromatosis – Texas NF Foundation 15th Anniversary Video (1995) “NF XV – In Search Of The Cure” Part 1 of 2 – 26 minutes
Neurofibromatosis – Texas NF Foundation 15th Anniversary Video (1995) “NF XV – In Search Of The Cure” Part 2 of 2 – 23 minutes

Texas NF Foundation 30th Anniversary Video, 2010

Neurofibromatosis Interview with Reggie Bibbs (FOX NEWS) Damali Keith, 2007

Debra Duncan Show – Reggie Bibbs & Neurofibromatosis” June 8, 1999

Wikipedia – Reggie Bibbs was interviewed on Nov 23, 2007 for Wikinews describing what it is like living with neurofibromatosis and what he has done via his website, blog and other resources to increase awareness of NF.

Music Nite with Reggie Bibbs

9 thoughts on “Go Ahead, “Just Ask”: Neurofibromatosis Patient Invites Questions, Makes Friends – M.D. Anderson Cancer Center

  1. Great article, Reggie! You continue to lift people’s spirit and inspire!

  2. Thank you Lou. I’m happy that I can be of help.

  3. Wonderful article Reggie and Lou. I’ll keep a lookout for the hard copy and mail you a few if you don’t already have some.

  4. Thanks, Bart, that would be great!

  5. Sure, I have Reggie’s address.
    By the way, I can’t get any of the videos above for the “NF Symposium” or “Related Videos” to work? Is it just me?
    With all the recent exposure I’m sure there will be a lot of people visiting the Cafe and wanting to see them.

  6. Sorry, Bart, I must have been on crack when I linked the videos. Working on it now.

  7. hey man i liked your history and i liked your shirts

  8. Hey reggie i just wanted to let you know i think you are an amazing person and truely are beautiful and really inspirational and you are a really great person to reach out to your community to educate people what its like to live with NF and i really like your baret that you wore to go see maurice too i hope life gives you everything you truely deserve 🙂

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