Reggie Bibbs and Maurice Simpson have had to accept and manage a debilitating condition called 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,” says Reggie Bibbs when he was asked about his struggles with a painful genetic condition.
Reggie suffers from neurofibromatosis (NF) which causes benign tumours to grow along certain types of nerves that affect the development of bones or skin. This condition causes pain, and even death, as the tumors get bigger over time.
Reggie, 49, from Houston, Texas, has struggled with NF since he was a baby, “I was eight months old when we found out about neurofibromatosis. They found a small tumour on my heel and a small tumour on my eye and one in my mouth.”
Growing up, Reggie was victim of harassment. In an exclusive interview prepared by Wikinews reporter Michael Laurent, Reggie said, “It was really difficult going to school because there were a lot of kids who used to make fun of me, and there were some that were nice,” he says.
NF has spread all over Reggie’s body including his leg and the left side of his face, “My leg from the knee down are tumours 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 became to raise awareness about the causes of NF through his ‘Just Ask’ Foundation. By talking about his experiences Reggie hopes he will help others. Another person who understands the challenges of NF is Maurice Simpson, an outgoing and confident man from Ogden, Utah, who doesn’t 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 been married for 11 years and is the manager of a fast food restaurant. In an article written by Janae Francis, Maurice he 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 anonymously sponsored Maurice’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”.
Reggie and Maurice share a lot in common and agreed to feature in TLC’s documentary My Brand New Face. The documentary aimed to educate the world about neurofibromatosis and showcased Reggie travelling to meet Maurice for the first time face-to-face and the brotherly relationship they formed. The documentary also covered a graphic scene in which Maurice underwent surgery for 13 hours and another five hour procedure to remove the tumour from his face.
What You Need To Know About Neurofibromatosis
Facts
People affected by this condition develop non-cancerous tumours along their nerves.
NF can also cause skin discolourations and bone abnormalities.
Causes
The cause of NF is a change in a person’s genetic material, known as a genetic mutation. There are two genes that cause two different types of NF: neurofibromatosis type 1 (NF1) and neurofibromatosis type 2 (NF2).
NF1 is also known as von Recklinghausen’s disease and occurs more commonly than NF2.
People with NF2 develop tumors that appear on the nerve that connects the ear to the brain. Because of their association with the ear, tumours on this nerve may cause hearing difficulties, dizziness, ringing in the ears (tinnitus), and balance problems.
Reggie has a youtube channel
http://www.youtube.com/user/reggiebibbs/videos