Video transcript · 10 min · 1,061 words

Reggie Bibbs on living with neurofibromatosis, part 1: transcript

Reggie Bibbs, a 43-year-old man from Houston, Texas, answers Wikinews interview questions about living with neurofibromatosis type 1. He explains the condition, how it was diagnosed in infancy, and the mistreatment he faced growing up. He also describes his family's history with it and shows how it affects his body.

Key points

Bibbs explains that neurofibromatosis is a genetic disorder that causes tumors to grow on the body and nervous system, and he has NF1.
He was diagnosed at eight months old, when tumors were found on his heel, eye and the roof of his mouth.
His mother learned she carried the condition only after his diagnosis, and she worried she had caused it during pregnancy.
He describes being teased at school and a junior high teacher who made a hurtful remark and never apologized.
Two sisters, a brother and his mother also have NF; his brother developed a cancerous tumor at age 46.
He shows tumors on his arms, back and face, mentions surgeries on his nose, lip, cheek and eye, and a growing tumor on the optic nerve of his left eye.

Chapters

0:00What neurofibromatosis is
0:45Diagnosis as a baby and his mother's reaction
3:20Growing up looking different
4:38Hurtful incidents with a teacher and a store
7:02Family members with NF
8:10A tour of how NF affects his body

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 worried now. How did you find out that you had in that? 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 asked the doctors, is it something that she did, because she thought that there 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, I don't know. What was it like growing up as a child in elementary school or in your life? 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 are, were wearing.

3:53The right shoes and I 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 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 were, 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 electronics 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 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 enough tumors turned to cancer, and that was really 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 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? Great. And above my left eye, there's a lot of itching on the inside. You know, just tingles and itch. Where have you had surgeries? I've had surgery on my nose, on my lip, and on my cheek, and eye.

9:32Can you turn your head to the right? Your left ear seems to be lower. How come? Right. It's the fatty tissue and everything. It 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 grown.

Source and licence

Recording: File:Reggie Bibbs Wikinews Interview (part 1 of 3).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.