Interview with Reggie Bibbs on his life with neurofibromatosis
Friday, December 14, 2007
Infobox: What is neurofibromatosis?
Neurofibromatosis (NF) is a genetic condition causing benign tumors (neurofibromas) to grow along certain types of nerves and, in addition, it can affect the development of bones or skin. There are several variants of the disease but type 1 and type 2 NF account for the vast majority of cases.
The disease manifestations can vary from very mild to severe. Major symptoms include growths on and under the skin; skin pigmentations called café au lait spots in type 1; acoustic nerve tumors and consequent hearing loss in type 2. Growths can affect nearly all parts of the body, and pressure on nearby structures can cause a wide variety of complications. There is a small risk that the tumors transform into malignant cancerous lesions.
NF is one of the most common single-gene human diseases; around 1 in 2,500-4,000 live births are affected by NF-1, whereas NF-2 occurs in about 1 in 50,000-120,000. Both type 1 and 2 are autosomal dominant conditions, meaning that only one copy of the mutated gene need be inherited to pass the disorder. A child of a parent with neurofibromatosis and an unaffected parent will have a 50% chance of inheriting the disorder. The gene responsible for NF-1 and possibly NF-2 is thought to function as a tumor suppressor gene.
In most cases of neurofibromatosis 1, patients can live normal and productive lives. In about 25-40% of patients there is an associated learning disability with or without ADHD. In some cases of neurofibromatosis 2, the damage to nearby vital structures, such as the cranial nerves and the brainstem, can be life-threatening. When tumors are causing pain or disfiguration, surgery is thus far the only proven beneficial treatment option.
Reggie Bibbs is a 43-year-old-man living in Houston, Texas. Mr Bibbs was born with a genetic disease called neurofibromatosis (NF), which causes him to develop tumors on his body (see infobox on the right). NF can be a subtle disease, but in Bibbs' case it has left him with a disfigured face and deformed leg. But he is happy with the way he looks, and doesn't want to change his appearance to please other people. He has launched a successful campaign entitled "Just Ask", and that's just what Wikinews did in a video-interview.
The interview was prepared by Wikinews reporter Michaël Laurent with the help of Bertalan Meskó (who has a popular genetics and web 2.0 blog). Their questions were sent to a close friend of Mr. Bibbs, Lou Congelio, who kindly conducted the interview.
- Reggie Bibbs: My name is Reggie Bibbs, I am 43 years old and I live in Houston, Texas.
Wikinews: Can you explain to our readers in simple terms what exactly is neurofibromatosis?
- RB: Neurofibromatosis is a genetic disorder that causes tumors to grow throughout the body and the nervous system. The tumors grow anywhere on the body. NF-2 is when the tumors grow on the inside and on the hearing nerves and the eyes.
WN: How are you affected?
- RB: I have NF-1 and the tumors are outward, they call this disfigurement and it has affected my legs and the left side of my face.
- (interviewer directs the camera)
WN: How did you find out you had NF?
- RB: I was eight months old, and that's when we found out about neurofibromatosis. At that time they were calling it "von Recklinghausen disease". My mom took me to the Shriners Hospital, they examined me and that's when they told her, I had von Recklinghausen disease or neurofibromatosis. They found a small tumor on my heel and a small tumor on my eye and one in my mouth, on the roof of my mouth.
WN: Was it painful?
- RB: At that time I remember my mom telling me, that the tumor on my leg was really painful, because she would cry when she would try to put shoes on my feet.
WN: How did your mom react to finding out you had neurofibromatosis? Did she know anything about it?
- RB: My mom didn't know anything about it until I was diagnosed. And they saw my mom's arm and they said, you know, this right here is a tumor and this is where it came from. And they said it is the same type of tumor. She was very hurt, you know, she asked the doctors if it was something she did. Because she thought that is was something she did during the pregnancy that caused this disfigurement.
WN: What causes NF?
- RB: NF is caused by a defective gene. And this gene is defective and it is telling the body to grow tumors.
WN: What was it like growing up, as a child in elementary school?
- RB: Growing up and going to elementary and being a child was really difficult, because you knew that you looked different from all of the other kids. And they all were wearing the right shoes and I had to wear different shoes. And I just looked different from anyone I had ever seen.
WN: Was your face as disfigured as it is now?
- RB: Well, yes, my eye was really a lot different growing up, but my lip and the left side of my cheek ... that was, you know, really noticeable. And it was really difficult going to school because there were a lot of kids that used to make fun. And there were some that were nice.
WN: You told me one time about a teacher in school who did something. Tell me about that.
- RB: This was in junior-high and I was in special-ed and we would ride the smaller buses. So one day my bus was late and we were there, a group of kids, we were waiting for the bus. By this time some of the teachers were leaving. And there was one particular teacher that was leaving, and as he passed by he told me, "Wow, where did you get that thing from?" And I was shocked. He said, "Oh, never mind, I thought you were wearing a mask." It really hurt me because it was embarrassing and I had some friends with me — and it was a teacher. And I just felt really let down and betrayed because a teacher said this. And after he realized his mistake he never apologized, and that really hurt me.
WN: Have you encountered other incidents like this?
- RB: There were a few. One that really springs to mind, was when I was going to an electronics store. My mom and I were walking to the door. We saw one of the managers locked the door and wave us away. I knew they weren't closed, it was in the middle of the afternoon on a Saturday, and there were people walking around, shopping. And he just locked the door and waved me away.
WN: What about others in your family with NF?
- RB: Well, I'm the youngest of six, I have two sisters that have NF and they have milder cases. They have a few tumors on their body but none that are really disfiguring. And also, I had a brother, one other brother, that had neurofibromatosis. He had some of the tumors. He also developed a neurosarcoma, he was about 46-years old and one of his tumors turned to cancer. That was really difficult for all of us because it was unexpected. My mom, she has it and she also has a few of the small tumors. Other than that, there is no one else in the family that have it.
A head to toe body tour
WN: If we had a tour of your body, show me from the head to your arms to your leg, how NF has affected you.
- RB: NF has affected me by some of the tumors on my arms, and, I have a few on my back...
WN: Can you show me your arm?
- RB: My arms? Like here, some of the tumors right here...
WN: Okay, you point to, like, the one on your elbow. Does that hurt?
- RB: No this is very soft, and it doesn't hurt. And there's one here, and one here, and there's a few here...
WN: So none of those hurt?
- RB: None of these hurt.
WN: Do any of them hurt, on your face or your leg?
- RB: None of the ones 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.
WN: Where have you had surgeries?
- RB: I had surgery on my nose, on my lip and on my cheek, and eye.
WN: Can you turn your head to the right? Your left ear seems to be lower. How come?
- RB: Right, it's the fatty tissue and everything, it just hangs, it pulls everything down. I have a small tumor on the optic nerve of my left eye, and it's growing, and it's pushing the eye outwards, and it's out of the eye socket, and that's what makes the eye look lower.
WN: Do you have any vision in the left eye?
- RB: I have very little vision in the left eye.
WN: Can you make out movement?
- RB: Well, the only way I can really see out of it is when I cover the right eye. Then I can see out of it, I can't see really well, but I can count fingers from maybe about 3 feet.
WN: Tell me about your leg.
- RB: My leg is... from the knee down, they are tumors and a lot of fatty tissue, and it swells. It's difficult to walk. 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.
WN: It looks very painful, your leg looks like it's an S.
- RB: That's because on the left side right here it's just a lot of fatty tissue. The bone is not curved it's just, this right here is just a lot of extra tissue. If I take the sock off it won't look like an S. All the fatty tissue would just drop. So, that's how that works.
WN: Okay, tell me about your shoe.
- RB: The shoes are specially made, they're custom made. A cast is made and they make the shoes from the mold. Because of the leg, I have to have special support.
WN: Can you show me the side of your foot... and the other side?
- RB: The shoes they help support the ankle from bending to one side. The right foot is not affected at all, only the left side.
WN: It looks like mainly the left side of your body is affected by NF.
- RB: Yes, mainly the left side.
WN: Any reason for that?
- RB: No, there's no reason. We just never know how NF is gonna affect anyone. Everything on the left side accept the arm. The arm has a lot of strength and is not disfigured in any way.
The daily life of Reggie Bibbs
WN: What's a regular day in your life like?
- RB: A regular day for me starts off with waking up in the morning and taking care of my leg. There are a few areas that really need treatment, special dressings for it, and after I, you know, wash and dress that area and then I go through the difficult task of putting the sock on. So I have to really work hard with this sock with a net on and after that everything else goes on. And I have to work on my eyes, I have to wash it when I wash and put my eye ointment in. And then after that it's basically doing what everyone else does with the exception of... I do a lot for my family so I'm doing a lot for them which I don't mind. I'm happy to help. That's basically how it starts. And I usually go to the grocery stores and things like that in my area, where people know me. They are nice there.
WN: Is it hard for you going outside your area?
- RB: It's really hard for me to go to a store that's not in my area. It's like there's a boundary to where I stay inside of that boundary. There's only certain stores in the area that I would go to and if I'm on the other side of town if I need something I won't go to a store where people are not used to seeing me. I just don't want to create problems, I don't want to shock anyone or hurt anyone or I don't want to be hurt. So I just don't feel comfortable into going into stores that I'm not accustomed to be going to.
WN: What kind of bad experiences have you had?
- RB: Well, there are some bad experiences where I walk up to a door, some people will lock the door and won't let me in. Some people will just turn and go the other way or cover their face or just shy away from me.
WN: How does that make you feel?
- RB: It makes me feel angry because it makes me feel like I know they know better but they're doing it to be mean.
Raising awareness and his campaign
WN: What are you doing personally to raise awareness about NF?
- RB: I am trying to get better at going to a lot of the activities that we have in our town. The Renaissance festival, the Rolly Derby. I'm trying to make myself visible for people to get a chance to see me and to see that I like the same things that they like and once you get over the outward appearances then I'm a pretty good person to know.
WN: I heard you went to your first baseball game this year. Why didn't you go to a baseball game before?
- RB: The reason why I've never gone to a baseball game before this year I was just afraid of going by myself and afraid of what people would say. And so I went to my first game with my friend and I really was surprised. I've learned a lot that I have to give people a chance. And when I went people were really really nice to me. And I was just really impressed. And it made me want to do more because people were very accepting to me and same at other places and they would actually come up to me and make the first move and shake my hand and just give me words of encouragement. And since that first game it makes me want to go and do more. With each place I go I find acceptance.
WN: What would you say to somebody who sees you, who doesn't know you, doesn't know about neurofibromatosis, what would you tell them to do?
- RB: I would tell them, for anyone that have never seen me, or have never heard of NF, if they would just ask, and try to give it a chance. Just ask, you know, 'what is this', just give it a chance. It may be NF for someone and it may not, but try to put yourself in that person's shoes, try to think about how would you feel. The person may not have NF, they may have some other disorder, but we all need acceptance, we all need a chance.
WN: You talked about telling these people (coughs) to just ask. You have a T-shirt on, tell me about the T-shirt.
- RB: The T-shirts came about for that reason. I would see a lot of people that would look at me, and some would look at me like they admire me, some would look like 'I wonder if I should ask', and they don't know. They don't know it's ok with me to ask, and I said 'I would like to let people know, I don't mind questions', and that's why I came up with the 'Just Ask' campaign.
WN: Tell me about your T-shirt, what's on the front?
- RB: The front is my image, and the back is 'Just Ask', with my website.
WN: Could you stand up and show me?
- RB: Sure. On the front is my image, and on the back is the word 'Just Ask' with my website [zooming in, reggiebibbs.com]. I have a blog where we meet and talk with others that have NF, or just others that just want to know about it, they may have family members, just let them know what were doing with the Just Ask campaign, let them know what I'm doing at the events, and we share stories, and photos, and everything like that.
WN: How important is that blog to people with NF?
- RB: That blog is very important to a lot of people, because it's a way of connecting with others that have NF. It's a way of connecting with moms and dads that need support from other parents and from others that just can say words of encouragement.
WN: Do you think there's other people like you who don't want to go out in the public, and this is their link to people?
- RB: I really do, I really believe. You know, I chat with a lot of others that have NF and that don't go anywhere and this is the way we communicate. We try to encourage others to do just that, to go out with a friend and let people see you and give them a chance to know who you are. And let them see you having fun. I guarantee you, if they see you smiling and enjoying yourself, that will encourage them.
WN: Do you think by you going out and taking pictures and putting them on your blog, that you've made other people wanna do that too?
- RB: I really believe that and that's what my goal is, to let others that have NF see me doing this. I want to encourage them to do the same thing, they can do the same thing. Give people a chance, smile at them, let them know that you're happy and you're not bitter. I would encourage you to find a friend and go places, just go to as many places as you can think of, and let people see that you're having fun.
WN: Is there anything else you're doing on your website that we should know about?
- RB: Yes, right know I'm selling T-shirts to help raise awareness and research for neurofibromatosis and to search for a cure.
WN: How has it been going?
- RB: It's been going great, and I hope it continues to go great.
WN: I've noticed that a couple celebrities are wearing your T-shirt.
- RB: Yes there is. Sugar Ray Leonard is wearing one, Greg Gorman is wearing one. Those are the ones who are wearing one, and I hope we can get more celebrities wearing my shirt.
WN: How are blog readers and YouTube users helping you [raising awareness, ed.]? And I guess that would include MySpace.
- RB: YouTube is going really great. I'm getting a lot of messages from everyone, you know, everyone is on YouTube. We get a lot of messages from people that have never heard of neurofibromatosis and they always add words of encouragement, they say they're gonna share the website with a friend, and I'm always happy to see those.
WN: Tell me about all the internet things that you are involved in.
- RB: I'm also working with MySpace. I have a lot of MySpace friends. I'm using MySpace, Ringo, YouTube, Facebook, Flickr, and it's used with little cost or no cost and it's really helping a lot.
WN: Why do you think there are so many people with NF on the internet?
- RB: I really believe that people with NF are really home-based and they feel more at easy talking with friends on the computer. This is were all these accounts come in and it's easier to reach people through the computer.
WN: Reggie, were do you see yourself in five years?
- RB: I see myself five years from now, still doing the website, I'm gonna continue to do the website, continue to spread awareness of neurofibromatosis until we eventually have a cure. That's what I want, I want to continue until we find a cure for neurofibromatosis.
WN: Are we close?
- RB: I believe we are close, but still not close enough.
WN: Okay, thank you.
- RB: You're welcome.