Interview with Reggie Bibbs on living with neurofibromatosis: transcript

Key points

• Bibbs explains that neurofibromatosis is a genetic disorder that causes tumors to grow on the body and nervous system, and that he has NF1.
• He was diagnosed at eight months old, and his mother, siblings and a brother also have the condition. The brother's tumor turned to cancer at age 46.
• He recalls being mocked as a child, including by a junior high teacher, and being turned away at a store door.
• He describes his tumors, his left eye, his swollen left leg, the compression sock and his custom-made shoes.
• He avoids stores outside his own area but now attends local events and went to his first baseball game, where people were kind.
• He started the Just Ask campaign with T-shirts and a blog, and he wants to keep spreading awareness until a cure is found.

Chapters

1. 0:00What neurofibromatosis is
2. 0:45Diagnosis and his mother's reaction
3. 3:20Childhood and incidents of mistreatment
4. 6:31Family members with NF
5. 8:10A tour of the tumors, eye, leg and shoes
6. 13:25A regular day and avoiding unfamiliar stores
7. 16:38Raising awareness and the first baseball game
8. 19:51Just Ask campaign, T-shirts and blog
9. 24:47Online outreach and plans for the future

Full transcript

0:00My name is Reggie Bibbs. I'm 43 years old and I live in Houston, Texas. Can you explain to our readers, in simple terms, what exactly is neurofibromatosis? Neurofibromatosis is a genetic disorder that causes tumors to grow throughout the body and the nervous system. The tumors grow anywhere on the body, and NF2 is when the tumors are growing on the inside and growing on the hearing nerves and the eyes.

0:45How are you affected? I have NF1, and the tumors are outward that causes disfigurements, and it affected my leg and the left side of my face. I'm watering now. How'd you find out your hair in there? I was eight months old, and that's when we found out about neurofibromatosis. At that time, they were calling it von Recklenhaus disease, and Mom took me to the Shriner's Hospital, and they examined me, and that's when they told her that I had von Recklenhaus disease or neurofibromatosis.

1:39They found a small tumor on my heel and a small tumor on my eye and one in my mouth, the roof of my mouth. Was it painful? 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.

2:14How did your mom react to finding out you had neurofibromatosis? Did she have anything about it? 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, you know, and this is where it came from. And they said it's the same type of a tumor.

2:44And she was very hurt, you know, she thought, she would ask the doctors, is it something that she did, because she thought that it was something that she did during her pregnancy that caused, you know, this disfigurement. What causes NF? And that was caused by a defective gene, and this gene is defective and it's telling the body to grow tumors.

3:20Um, well... What was it like growing up as a child in elementary school or junior high school? 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. They are, were wearing.

3:55I had to wear different shoes and I just looked different from anyone else that I have ever seen. Was your face as this figure as it is now? Yes, my eye was really a lot different growing up. and 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.

4:38You told me one time about a teacher at school. 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, where we were waiting for the bus.

5:08And 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. And he said, oh, never mind. I thought you were wearing a mask. And it really hurt me because it was embarrassing because I had some friends with me and it was a teacher and I just really felt let down and betrayed because a teacher said this.

5:51And after he realized his mistake, he never apologized and that really hurt me. Have you encountered other incidents like this? There were a few. One that really sticks to mind is when I was going to an electronic store. And as my mom and I would walk into the door, we saw one of the managers lock the door and wave us away.

6:31And I knew they weren't closed because 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. What about others in your family? Do you have other family members with NF? Well, I'm the youngest of six.

7:02I have two sisters that have NF, and they have milder cases. They have a few of the tumors on their body, but none that are really disfiguring. And I also, I had a brother, one of the brothers that had neurofibromatosis. He had some of the tumors. He also developed a neurosarcoma.

7:34He was 46 years old and one of his NF tumors turned to cancer and that was really difficult difficult for all of us because it was just unexpected. My mom, she has it and she also has a few of the small tumors. Other than that, there's no one else in the family that have it. Show me a tour of your body. Show me from the head, to your arms, to your leg. How long enough has affected you?

8:10Okay. Enough has affected me by some of the tumors on my arms, and I have a few on my back. Can you show me your arms? my arms right here so the tumors right here no this is very soft and it doesn't hurt and there's one here and one here and there's a few here Okay. So none of those hurt?

8:51None of these hurt. Which one? Do any of them hurt on your face or your leg? None of the ones on my face hurt. They're just like extra growth, you know, fatty tissue. How do you zoom in? Right. And above my left eye, there's a lot of itching on the inside. You know, just tingles and itch. on the inside above my eye. Where have you had surgeries? I've had surgery on my nose, on my lip, and on my cheek, and eye. Can you turn your head to the right? Yes. Your left ear seems to be lower. How come? Right. It's the fatty tissue and everything.

9:46It just hangs, it pours everything down and the tumor, I have a small tumor on the optic nerve of my left eye and it's growing and it's pushing the eye outward and it's out of the eye socket and that's what makes the eye look lower. Do you have any vision in the left eye? I have very little vision in the left eye.

10:21Well, the only way I can really see out of it, if 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 three feet. My leg, my leg is from the knee down. You know, there are tumors and a lot of fatty tissue and it swells and it's difficult to walk and I have to wear a special sock to hold it together to keep it from expanding.

11:09It's a compression slot and it helps with circulation. It looks very painful, like your leg looks like it's a S. Yes, that's because on the left side right here, it's just a lot of fatty tissue. The bone is not, you know, curved, it's just, this right here is just a lot of extra tissue.

11:41And if I take the sock off, it won't look like an S. All of it, the fatty tissue will just drop. So, that's how that works. Okay. Tell me about your shoes. I'm zooming in on your shoes. The shoes are specially made. They're custom made. And they're made by a cast. A cast is made. And they make the shoes from the mold. Because of the leg, I have to have special support.

12:20Can you show me the side of your foot? The side, right here. And the other side, right here. And the shoe, they help support to keep the ankle from bending to one side. The right foot is not affected at all. and the right foot is not affected on the left side.

12:53So it looks like mainly the left side of your body is affected by the end. Yes, mainly the left side. Any reason for that? No, there's no reason. We just never know how NF is going to affect anyone. Everything on the left side except the arm. Your arm is not, you know, has a lot of strength. It's not disfigured in any way.

13:25Okay. Describe, what's a regular day in your life like? A regular day, for me, it starts off 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 pitting the sock on. So I have to really work hard with the sock, getting that on, and then after that, everything else goes on. And then I have

14:26to, you know, work on my eye. I have to wash it with eye wash and put my eye on me then. And then after that, it's basically doing what everyone else does, with the exception of, you know, well, I'll do a lot for my family, so I'm doing a lot for them, which I don't mind. I'm happy to help. and that's basically how it starts. And I basically go to the grocery stores and things like that in my area where people know me and they are nice there.

15:13Is it so hard for you to go outside your area? It's really hard for me to go to a store that's not in my area. It's like there's a boundary, you know, 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, you know, I won't go into a store where people are not used to seeing me, because I just don't want to create problems, I don't want to shock anyone or...

15:59You know, I 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 going to. What kind of bad experiences have you had? Well, there are some experiences where I will walk up to a door, some people will lock the door and won't let me in. Some people would just turn and go the other way or cover their face or just shy away from me.

16:38How does that make you feel? Makes me feel angry because it makes me feel like I know they know better but they're doing it just to be mean. That sounds like a nice segue. So what are you doing about it? What are you doing personally to raise awareness? So what I am doing, you know, to raise awareness, I'm trying to get better about going to a lot of the activities that we have in our town.

17:16The Renaissance Festival, the Roller Derby. I try to make myself visible, you know, 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, you know, appearances, then I'm a pretty good person to know. Were there any surprises? I understand you went to your first baseball game this year. Why didn't you go to the baseball game before?

17:49Before, I was just afraid of going by myself and afraid of what people will say. And so I went to my first game with a friend and I was really surprised and 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 they've seen me other places and they Actually come up to me and make the first move and shake my hand and just give me words of encouragement.

18:51And since that first game, it makes me want to go and do more. Because each place I go, I find acceptance. 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? I would tell them, for anyone that has never seen me or never heard of NF, if they would just ask and try to give it a chance, just ask, you know, what is this, or just give Give it a chance, and it may be NF for someone and it may not, but try to put yourself in that person's shoes and try to think about how would you feel, you know, the person may

19:51not have NF, they may have some other disorder, but you know, we all need acceptance, we all need a chance. Do you talk about telling these people that you... Just ask. You have a t-shirt on. Tell me about the t-shirt. The t-shirts came about for that reason, you know, because 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. And they don't know it's okay.

20:36with me to ask. And I said, I would like to let people know, you know, I don't mind questions. And that's why I came up with the Just Ask campaign. Tell me about your T-shirt. What's on the front? The front is my image, and the back is Just Ask, which is my website. Sure. On the front is my image, and on the back is the word, just ask, with my website.

21:21Right. And I have a blog where we meet and talk with others that have NF, or just others that just want to know about it, and they have family members, and just let them know what we're doing with the Just As Campaign. Let them know what I'm doing at the events, and we share stories and photos and everything like that.

21:54How important is that blog to people with NF? 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, you know, that just can share words of encouragement.

22:25Do you think there's other people who don't want to go out in the public? And this is their link to people? I really do. I really believe that I've, you know, I've chatted with a lot of others that have NF and that don't go anywhere. And this is a way where we communicate and 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. And I guarantee you if they see you smiling and enjoying yourself, that we encourage them.

23:12Do you think by you going out and taking pictures and putting them on your blog that you've made other people want to do that too? I really believe that and that's what my goal is to let others that have me in there see me doing this and 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. And I would encourage you to find a friend and go places. Just go as many places as you can think of. And let people see that you're having fun.

23:58Is there anything else you're doing on your website that we should know about? Yes, right now I'm selling t-shirts to help raise awareness and research for neurofibromatosis and to search for a cure. How's it been going? It's been going great, you know, and I just hope it continues to go great. I've noticed that a couple celebrities are wearing your t-shirt. Yes, there is. Sugar Ray Leonard is wearing one. Greg Gorman is wearing one. Those are the ones that are wearing one. And I would hope that we can get more celebrities wearing my shirt.

24:47How are blog readers and YouTube users helping you? And I guess that would include YouTube is going really great. I'm getting a lot of messages from everyone, you know, everyone is on YouTube, and we get a lot of messages from people that have never heard of neuropharmatosis, and they always add words of encouragement, and they say they're going to share the website with a friend, and And I'm always happy to see those.

25:29I'm also working with MySpace. I have a lot of MySpace friends. I'm using MySpace, Vigo, YouTube, Facebook, and all of those, and Flickr, and it's used with little cost or no cost, and it's really helping a lot. Why do you think there are so many people with NF on the Internet?

26:02I really believe that, you know, people with NF, they are really home based and they feel more at ease, you know, talking with friends on the computer. And this is where all these accounts come in, and it's easier to reach, you know, people through the computer. Reggie, where do you see yourself in five years?

26:36I see myself five years from now still doing the website. I'm going to continue to do the website, continue to spread awareness of neurofibromatosis until we eventually have a cure. And that's what I want. I want to continue until we find a cure for neurofibromatosis. I believe we're close, but still not close enough.

27:12You're welcome.

Source and licence

Recording: File:Reggie Bibbs Wiki Interview 112307.ogv by Questions by User:Stevenfruitsmaak and User:NCurse , video by Lou Congelio (2007-11-23), via Wikimedia Commons. Licence: CC BY 3.0.

The transcript is machine speech-to-text by the TidyTools Audio & video transcriber; the summary, key points and chapters were written by Claude from that transcript. Both may contain errors: check the recording before quoting it.