Living With Neurofibromatosis
When most of us worry about pimples, zits or even wrinkles. Real people like Reggie Bibbs and Maurice Simpson embrace, accept and manage to live with Neurofibromatosis throughout their lives.
“None of the one’s on my face hurt. They’re just like extra growths, you know, fatty tissue. Above my left eye there’s a lot of itching on the inside, it tingles on the inside above my eye.” This is one of Reggie Bibbs response when he was asked about his struggles with a disease called Neurofibromatosis.
Neurofibromatosis (NF) is a genetic condition causing benign tumors to grow along certain types of nerves that affects the development of bones or skin. This brutal condition causes pain and even death and the tumors get bigger over time.
Reggie Bibbs a man from Houston, Texas. His struggle with NF began when he was a toddler, “I was eight months old when we found out about neurofibromatosis. They found a small tumor on my heel and a small tumor on my eye and one in my mouth”.
Growing up, like any other child, Reggie was victim of harassment. In an exclusive interview prepared by Wikinews reporter Michael Laurent, Reggie has pointed out how difficult growing up was and how he looked different from everyone else, “It was really difficult going to school because there were a lot of kids that used to make fun of me, and there were some that were nice,” he says.
NF has spread all over Reggies body including his leg and the left side of his face, “My leg from the knee down are tumors and a lot of fatty tissue and it swells. It’s difficult to walk.” Reggie’s leg is shaped like an S and he wears special socks to help him get around, “I have to wear a special sock to hold it together to keep it from expanding. It’s a compression sock and it’s helped with circulation. If I take the sock off it won’t look like an S. All the fatty tissue would just drop,” he adds.
After numerous failed surgeries, Reggie’s mission is to put himself out there to raise awareness about the causes of NF. There are a lot of patients who fall victim of this dreadful disease but are afraid to seek help because they prefer to hide behind closed doors and deal with this ordeal by themselves.
Maurice Simpson is an outgoing and confident man from Ogden, Utah. He does not let his condition get in his way. He has had Neurofibromatosis since he was six-weeks-old and the disease has spread and disfigured his face. The 36-year-old father of five has accepted his state and with the support of his family, he faces each challenge as an opportunity to help those in need.
It’s clear that Reggie Bibbs and Maurice Simpson share a lot in common. Both sufferers of NF and till today they manage to live with it and are on doing more research to help find a cure.
Together they agreed to feature in TLC’s ‘My Brand New Face’ which aired earlier this year. The documentary is aimed to inform and educate the world about Neurofibromatosis. The reality show showcased Reggie travelling to meet Maurice for the first time face-to-face and together they share a lot of common interests.
The pair was happy to have finally met and formed a brotherhood relationship. Maurice works as a Manager at a fast food chain and lives with his supportive wife of eleven years and children. He loves being in front of people. In an article written by Janae Francis, Maurice said, “I don’t want to hide or stay in the house. I want to be out and about making people happy…I’m in that point in my life with all the questions people ask. I just want to do more”. A local businessman showed his generosity when he anonymously sponsored Mr Simpson’s surgery, “My anonymous donor, I call him my guardian angel, I mean, he’s just a great guy. Whenever I think about it, I get kind of choked up because I don’t know why he would do something like that, you know”. The documentary covered a graphic scene where Maurice underwent surgery for thirteen hours and a five hour procedure to remove the tumor from his face. In another article by Carole Mikita, Maurice was pleased with the successful operation, “It looks a lot better, and it’s given me a new-found confidence”.
The ‘Just Ask’ Foundation was launched when Reggie wanted to spread the word about Neurofibromatosis. He knew that coming forward and taking a stand about NF will help people who fight this disease.