My name is Reggie Bibbs. I am on a mission to spread the word about neurofibromatosis. I figure the more people who know about my disorder, the more they will understand me, so I made a video. Actually, I’ve made a few videos. They can be seen on my website, blog, YouTube, Veoh and Vimeo as well as photos at my Flickr, Facebook and MySpace account. If you have neurofibromatosis or if you’re wanting to help spread the word, please click on the links above, leave a comment, send an email, add the urls as links to your blogs and sites or send to your friends and fellow NF people. The more we can band together, the stronger our voice will be heard. I thank you for reading this far and I truly hope to hear from you soon!

Make it a TREMENDOUS Day! – Reggie

What Is NF?
The neurofibromatoses (NF) are a set of genetic disorders which cause tumors to grow along various types of nerves and, in addition, can affect the development of non-nervous tissues such as bones and skin. NF causes tumors to grow anywhere on or in the body. A variety of terms are used to refer to NF
In 1882, NF was first delineated in the medical literature by Dr. Friedrich von Recklinghausen and was so known as Von Recklinghausen’s Disease for many years.Phakomatosis, from the Greek word “phakos” (meaning birthmark), refers to several disorders, including NF, characterized by birthmarks.

Neurocutaneous Disorder refers to any one of several disorders, of which NF is the most common, which affect the skin and the nervous system.

Types Of Neurofibromatosis

Neurofibromatosis (NF) has been classified into two distinct types: NF1 and NF2.

Neurofibromatosis 1 (NF1): also known as von Recklinghausen NF or Peripheral NF. Occurring in 1:3,000 births, web characterized by multiple cafe-au-lait spots and neurofibromas on or under the skin. Enlargement and deformation of bones and curvature of the spine (scoliosis) may also occur. Occasionally, tumors may develop in the brain, on cranial nerves, or on the spinal cord. About 50% of people with NF also have learning disabilities.

Neurofibromatosis 2 (NF2): also known as Bilateral Acoustic NF (BAN), is much rarer occurring in 1:25,000 births. NF2 is characterized by multiple tumors on the cranial and spinal nerves, and by other lesions of the brain and spinal cord. Tumors affecting both of the auditory nerves are the hallmark. Hearing loss beginning in the teens or early twenties is generally the first symptom.

Schwannomatosis: a rare form of NF that has only recently been recognized and appears to affect around 1:40,000 individuals. It is less well understood than NF1 and NF2, and features may vary greatly between patients.

Genetics of the NF1 and NF2 (NF)

NF1 and NF2 are called autosomal dominant genetic disorders. Half of all cases are inherited from a parent who has NF1 or NF2; half of all cases are not inherited but the result of a new or spontaneous mutation (change) in the sperm or egg cell. Each child of a parent with NF1 or NF2 has a 50% chance of inheriting the gene and developing NF1 or NF2. The type of NF inherited by the child is always the same as that of the affected parent (i.e. if the parent has NF1, each child is at 50% risk for NF1. If the parent has NF2, each child has a 50% chance to inherit NF2). However, the severity and the kind of manifestations may differ from person to person within a family. When a parent has NF1 or NF2, there is a 50% chance with each pregnancy for the child to receive the NF1 or NF2 gene, and a 50% chance for the child to receive two unaffected genes and to be free of NF1 or NF2. The child with NF1 or NF2, as a result of a new mutation, does have the 50-50 chance of passing the NF1 or NF2 gene on to his or her children. Unaffected parents who have a child born with NF1 or NF2 because of a spontaneous mutation do not have a 50-50 risk in future pregnancies. Their chance for another child with NF1 is about the same as that of any couple in the general population, that is, one chance in 7,000. One additional birth in every 7,000 results in a child who has inherited NF1 from a parent with the disorder. Thus, a total of 2 children in 7,000 or 1 in 3,500 are born with NF1.

Click here to read more.
Facts & StatisticsNF has been classified into three distinct types; NF1, NF2 and Schwannomatosis. They are caused by different genes, located on different chromosomes.

NF1 is not a rare disorder, it is the most common neurological disorder caused by a single gene.

NF1 is the more common form of NF, occurring in 1:3,000 births throughout the world.

NF2 is a rarer type, occurring in 1:25,000 people worldwide.

While today there is no consensus, studies indicate that Schwannomatosis occurs in 1:40,000 people, similar to NF2.

The Neurofibromatoses are genetically-determined disorders which affect more than 100,000 Americans; this makes NF more prevalent than Cystic Fibrosis, hereditary Muscular Dystrophy, Huntington’s Disease and Tay Sachs combined.

All forms of NF are autosomal dominant genetic disorders which can be inherited from a parent who has NF or may be the result of a new or “spontaneous mutation” (change) in the sperm or egg cell.

Each child of an affected parent has a 50% chance of inheriting the gene and developing NF. The type of NF inherited by the child is always the same as that of the affected parent, although the severity of the manifestations may differ from person to person within a family.

NF is worldwide in distribution and affects both sexes equally and has no particular racial, geographic or ethnic distribution. Therefore, NF can appear in any family.

Although most cases of NF1 are mild to moderate, NF1 can lead to disfigurement; blindness; skeletal abnormalities; dermal, brain and spinal tumors; loss of limbs; malignancies; and learning disabilities.

NF1 also has a connection to developmental problems, especially learning disabilities, which are five times more common in the NF1 population than in the general population.

The distinguishing feature of NF2 is tumors that grow on the eighth cranial nerve in both ears, commonly causing deafness and severe balance problems.

NF2 brings on increased risk of other types of nervous system tumors as well.

NF2 can also cause severe vision problems, including cataracts, retinal abnormalities and orbital tumors.

Accordingly, NF research may benefit an additional 100 million Americans (i.e. 65 million with cancer and 35 million with learning disabilities).

NF is not the “Elephant Man’s Disease,” although it was at one time believed to be. Scientists now believe that John Merrick, the so-called “Elephant Man,” had Proteus Syndrome, an entirely different disorder.

NF research began eighteen years ago by the Children’s Tumor Foundation, has been enormously productive ever since.

242 thoughts on “Meet Reggie Bibbs – I have neurofibromatosis

  1. Hi, my name is Patricia Stokley I have NF too. I am a regular on Reggie’s blog I have a facebook,and a my space account too. I too would like to spread awarness on neurofibromatosis.

    Reply
  2. I don’t have neurofibromatosis but I want to help spread awareness of this disorder so people will want to help. What makes me motivated to do this is that I continually ask myself, “What would I do if my daughter had NF?” That’s all it takes.

    Reply
  3. I dont have NF, but my oldest son Elijah does. Having a child with NF is tough, and it has made me a stronger person. Everything I do is to help find more resources and information to help him, and this blog has helped me tremendously, and also I’ve made some great friends out of it as well!

    Reply
  4. Wow, very strong Lou! I have seen how you have protected me in so many cases. Thank you Emily you are great. This is a wonderful thing going on here. Friends here that are not affected with NF and still want to be a part of our blog is also a great thing.

    Reply
  5. Emily, as a mother when something happens to our child it hurts us much more. So in a sense YOU do have NF. I also passed NF onto my youngest daughter. We are praying that the child she is carring does not have NF, but will face what ever happens. We are going to love that baby no matter what. We are also concern with Down Sydown on the baby’s father side. But what ever happens will not matter to me, that is my grandson and I am going to worship the ground that baby walks on.

    Reply
  6. I know that is true because of my mother. I know my mother still hurts for me. That is one of the reasons I don’t share every story with her. She always worries about me and I don’t want her too.

    Reply
  7. yall dont worry just tell your mom that you are strong and tough thats what i tell myself every day and I try really hard not to let things bother me and just tell myself I am strong and tough and just keep on going and Fight it I will keep whipping NF and not let it whip me and give up not me not never

    Reply
  8. I also have NF1. I been a long time member with the Texas NF Foundation when started with Bob Hopkins (1987) and have known Reggie from the NF Camp in the 90s, and with the other functions we have done, NF/NFL Alumni, Crawfest, and several other events. I often do the photos for these events. This is a great site that you started Reggie. I am up here in the Dallas area. I hope to see many here at the next NF Family Camp in Burton (just a hour – 90 minutes from Houston).

    Reply
  9. Hey, Rich, Happy Valentine’s Day!!! Welcome to the blog! It’s always great to meet new friends and have new things to talk about. (I’ll give you the low-down on Emily later when she’s not around but I think she used to dance at a “gentleman’s” club.)

    Reply
  10. Good Morning, and Happy Valentines to all hope everyone has a tremdious day. I found out who my new boss is going to be, I hope he lets me stay where I am, and not make any changes. I have kinda been my own boss for awhile and that is the way I like it!!!! I don’t need any changes. 😀

    Reply
  11. They are beautiful, my husband got me a candle and a balloon, the candle smells good, called wine and rosses. He said it would last a lot longer than flowers, I was not expecting anything this year with everything going on.

    Reply
  12. Hey guys I’ve got someone coming to my house tomorrow afternoon to talk to us about our “problem”. They are actually producing a new tv show, so you may see me on tv, lol.

    Reply
  13. hey Reggie whats up thats TRUE Reggie you dont want to make what ever it is mad if you do then you really will have problems on your hands

    Reply
  14. Yea Brian you really have to be careful. I guess us single guy’s are just here on the computer. Even Lou is not here. Now that is really sad if Lou? is out, and two hunks like Brian and myself are at home. Well I guess that is the best thing because if we went out then Lou wouldn’t have a chance at all. He is probably striking out now.

    Reply
  15. Yea, but can ya imagine Lou, trying to be all “NICE” and romantic with someone how long can Lou go with out saying something mean??!!!!! 😀

    Reply
  16. hey Reggie I will be honest though I wish I could see ghosts or see people like Emilys son I think it would be neat and try and talk to them I would freak out but then again I would talk to them and try to see why they are here to begin with and just try to figure out things you know what I mean

    Reply
  17. I know what you mean. It freaks me out to think about it. I don’t think I want to see that. I will be screaming like a little sissy. What better line can I follow this. Yea it would make me puick to see Lou trying to Rap. Meaning trying to impress a girl.

    Reply
  18. You really don’t know who they are from? I’d be calling the florist immediately. Maybe you have a stalker, Shelley. Reggie, where were you today when all this was going on?!!

    Reply
  19. I told you earlier Shelley I will take the blame for sending you the flowers but it really wasnt me I dont even know where you live LOL

    Reply
  20. Lou you are crazy. I don’t know what your are talking about. I was at a friends house at the time the order was placed for the red roses was suppose to be delivered this afternoon. He Maybe Brian know something about this.

    Reply
  21. Ugh, I didnt sleep at all last night. I woke up at 2:30am with my heart pounding and covered in goose bumps and I just felt like something was in the house. I stayed awake til 7:30am, then I fell back asleep for an hour. I am so tired. I cant wait for this lady to come talk to us today and get some people out here to check out our house, I cant keep doing this.
    Elijah told me that the little boy he sees has a black nose and a black mouth.. I told my dad that and he says that sounds like someone who froze to death.. I got a really weird feeling when he told me that. This sucks. I want to move..

    Reply
  22. We live in Navy housing, but its no longer ran by the military, it was bought out by a housing company and privatized in the past few years. I went to the housing office and asked them if they had any information about our house, such as anyone dying here or anything at all, and they said they didnt have anything. I went to research it myself at the library but they said that they didnt have anything either. The lady that is coming today said that they will do research for us on the house, and they also will bring 2 psychics and a paranormal investigator when they come back out. This is all just so crazy.

    Reply
  23. Emily this is not good for you the baby and Elijah. I would look for a hotel room. But sometime it’s more to it then just leaving. It may be something that just have to be fixed. From what I hearing that is what ever it is not not wanting to hurt anyone. Who knows they might be protecting you. I hope you get answers today. It only happens at night?

    Reply
  24. I heard the same thing too, that when the pic was being taken nothing out of the ordinary was seen until after it was develope or downloaded.

    Reply
  25. It only happens at night, and its always at the same time every night. We thought about taking pictures but both my husband and I are too scared to do it. Believe me, if we could afford a hotel I’d get one, lol. Whenever they come to do the investigation at night I will definitely stay in a hotel though.

    Reply
  26. Pictures like that creep me out.. thats exactly why I dont want to take pictures in my house, lol. I dont want someone showing up on the picture who wasnt there when I took it! I would never step foot in this house again. I told my husband that if they do find something when they come out and investigate that I will not stay another night here and thats final.

    Reply
  27. I think it would be very cool to be able to experience what you are experiencing, perhaps as a one-time visitor, not somebody who has to live with it. You are experiencing something that people would give anything to experience! Think of it as a positive – this spirit is seeking you out perhaps for some reason or feels comfortable to reveal itself.

    Reply
  28. Emily i wish I could see what your son is seeing I think it would be cool as I would try to talk to what I see and try to figure out whats going on you know talk to it and see if anything weird happens but thats just me I think it would be cool

    Reply
  29. A few years back in Eurka Springs Arkansas we went on a tour of the Cresent Hotel, it is suppose to be haunted. I wanted to stay so bad but we went with another couple and Vanessa and thier son were too young so we did not stay. But on our 10 year anervesay my husband suprised and took me. But I did not see any ghoust I was kinda disappointed, he was not! He lated said what he should of done was woke up in the middle of the night and made some noised for me!!!! LOL

    Reply
  30. See, my husband and I talked about that. That maybe whatever it is that is here is trying to communicate for help or maybe doesnt even know its not alive anymore. It hasnt shown any sign of wanting to harm anyone, but it still isnt very comfortable living with something like this. I know tons of people would love it, so they can come live in my house and I’ll take theirs, lol. At first we thought maybe it was trying to contact my husband, because he was the one who was always waking up at night at the same time with chills and goosebumps right before the noises would start. But last night it was me that woke up that way. I dont like it at all.

    Reply
  31. I never told anyone this only family. Mom and I went to Sea World. The Hotel Room we stayed in had to be haunted. We went to eat down stairs and we could see our room from where we was having lunch. We saw shadows in the room and no one was there. We radio would always pop out of the plug everyday. Stuff would happen when I was sleeping. I never had that to happen to me like that. It never happen sence we left that place. It is light to what you are going through. It was scary for me and I know you are freaked out about what you have to put up with.

    Reply
  32. NOT! That wasn’t the case. All you have to do is ask mom that she thought about the place we stayed. It was a very nice place but stuff happened that I didn’t like. Laugh if you want. It was just a little strange.

    Reply
  33. Nothing like has ever happen to me. And my husband paid big bucks and still nothing has ever happen. I would probally s*&& if it did! LOL

    Reply
  34. If you lived closer I would be there. But they would probally not come out for me, I don’t think they come out for the eager.

    Reply
  35. But just of it, the very place where you are standing someone could of died years ago, it could be an old Indian buriel ground, ect you just don’t know, I worked at the help desk for a very short time which is station across the street from the Walls, where they exicute the nights that I work to 12 by myself and had to leave by MYSELF were SPOOKEY I always felt like someone were watching me, I got in my car as fast as I could and SPED away. It was really eerie over there.

    Reply
  36. hay i hade class today and it was good . i think it help one to read if they have a prolumb . you just have to wont to do it well help you .
    Rich

    Reply
  37. Patricia – This entire area used to be inhabited soley by indians, it was the Pequot tribe, and they were all slaughtered basically, there are indian burial grounds marked all around us, but youre right you never know what once stood where your own house is.

    Reply
  38. We had our house built but, we don’t know what happen on the land before our house was built on happen. I have been told that there is an old Indian buriel ground in our neighborhood, and less face we were not the nicest ppl to the Indians.

    Reply
  39. The lady just left, we went over everything that has been going on and she said she would get back to us in a week or so. But if this falls through, I did get another phone call today from an affiliate with the Ghost Hunters people, so I will call him next if I have to.

    Reply
  40. Gee, I hope you are able to stay alive until they get back to you. All kinds of bad things could happen when you’re dealing with ghosts, spirits and things that go bump in the night!!! Emily, do you need somebody to stay with you and guard against evil? I can send Reggie.

    Reply
  41. Ghoust hunters wow, that is exciting!!!! not really but maybe you can get some help now. but it does seem like they are as bad as dr. “next week”, “check back in a month”… it really gets frustrating, I would want things done now!!!

    Reply
  42. I know I thought about those cookies all day long, I fought the urge to go downstairs and buy some more from the lady who had them, I was good. I just knew I had a box waiting for me at home. But no, my husband had to go and eat them!!!!!

    Reply
  43. man Patricia if I was there I would have ate all of them too those are my favorite but cant have them no more cuz they have wheat

    Reply
  44. that bites, my friend trish at work is alergic to choclate, sad thing is she has not always been alergic to choclate so she knows what she is missing.

    Reply
  45. same here I used to be able to eat wheat but not no more if I eat wheat now I get really sick to my stomach but I know what I am missing to I want a piece of bread so bad but cant have it the sad thing is my mom eats bread in front of me knowing I cant have it and want it bad

    Reply
  46. That is sad, I don’t bring choclate to work, when I bake cookies or a cake I make sure there is no choclate, cause I know she can’t have it, she always says don’t do that, that just because she can’t have does not mean we should have do with out. but I don’t bring choclate I think that would be rude, knowing she can’t have it. I bring peanutbutter cookies or cocontut cake, or cinnoman cake, just something that does not have choclate

    Reply
  47. Shelley, Patricia has wanted posters with her photo in every theater in Texas!!!! They say, “Wanted for smuggling candy into movie theaters instead of paying exhorbitant prices at the concession stand.” She’s a bad seed, Shelley, stay away from her!

    Reply
  48. So now every knows my deep dark secret I snuggle candy into movie theaters I have been doing that for years, when it was just me the the kids I was a single mom for a while I would take them to the dollar movie, I would snuggle candy in I am guilty and I just cannot quit the habbit I am hook I am a candy snuglar I snuggle candy into movie theaters.

    Reply
  49. 183 don’t feel like the long ranger. I have done that too. Who going to know. You just have to make sure you freeze it before you put it in your pocket. I can’t do like Lou. Hide in my a purse.

    Reply
  50. Did Lou acutally pay Emily a compliment he must have a fever, Reggie you got to save that for her, so she can have it for a later post, I know she will need it later for when he is picking on her which will be soon.

    Reply
  51. Reggie, did you know sniffing glue causes brain damage? Ok, I’ll say it slowly and loudly just for you, “D I D Y 0 U K N O W T H A T A I R P L A N E G L U E C A U S E S B R A I N D A M A G E ?

    Reply
  52. Well, I’d love to spend more time chatting but I have to go walk over red hot coals in my bare feet while poking daggers in my eyeballs. Also, need to do some work. Will log on tomorrow unless of course I freeze my tongue to the ice cube tray in the freezer.

    Reply
  53. Hey Reggie,
    I made it!!!!For everyone who has never experienced a 17 hour non-stop flight……Don’t do it!!! I thought it would be worth it not to stop in Europe on my way back, but it’s not. At some point in there you need a break. With about 4 hours to go in the flight I was in absolute misery. I’ll give you a buzz tommorrow.
    Jerry T

    Reply
  54. Wait a minute, I’m gone all night and I miss talk of chocolate (my favorite food everrrrrrrrrr) and Lou paid me a compliment?! Where is this, I cant find it.. what did he say?! lol

    Reply
  55. Emily go to comment 187 he said you were good looking and breathing, so he did pay you a compliment, I caught it right away. Then he tried to take it back but he did pay you a compliment.

    Reply
  56. lol Yea, he must have definitely been drinking!
    So this is crazy.. I am 28 days from my due date today! And I havnt done ANYTHING to get ready for the baby at all, I havnt even packed my hospital bag yet.

    Reply
  57. Girl, you better get busy sometimes they decide to come early, Vanessa decided to come about 10 days early and a very very very fast labor I got to the hospital just in the nick of time. LOL since her daddy really feel like taking me at that time.

    Reply
  58. It is because the baby is 10bl or is it that you know you have plenty of time? I bet your husband will be glad to be with you for two good reasons. To see your wonderful baby born into the world, and to get out of the house.

    Reply
  59. I think the longest flight I been on from Dallas to Germany was 12-13 hrs non stop. I often fly from Dallas to Honolulu which is 8 hrs 30 minutes. I must be getting older, those flight are getting harder to deal with. If they showing a boring movie, you can not just walk out.

    Reply
  60. Hi everyone!!! I hope I am doing this right, my name is Wendy and I too have NF. I live in Canada. I’ve ‘met’ Lou on my facebook as well as joined the Friends of Neurofibromatosis facebook. I hope I am posting in the correct area……I have a lot to learn as I have just recently been diagnosed after years and years of misdiagnoses.

    Reply
  61. Hi Wendy and welcome to my blog. Yes you are posting in the right place. I hope you visit often and feel free to talk about NF or anything you want to express. I never been to Canada, I hear its really a beautiful place.

    Reply
  62. Hello, Reggie, et al-

    I’m thrilled to see the interest and support that’s being generated. My son was diagnosed with NF in 1981, when he was five months old. I saw five pediatricians, all of whom gave the same information: “Your son has NF. He may or may not develop tumors that may or may not be cancerous, and you may or may not pass it onto other children. Don’t worry about it and don’t be an over-protective mother.”

    The only literature available in 1981 (pre-internet, MRI technology and genetic testing) was a single paragraph in the Pediatric Journal of Medicine. It wasn’t until I happened to watch a televised production of “Elephant Man” and information was flashed at the end of the program, that I learned of the NF clinic at Children’s Hospital in Philadelphia, where we live.

    My son, now 27, has nerve and structural damage in his leg from two ultimately unsuccessful de-bulking procedures, and tumor growth into the bone on this leg that leaves us with uncertainty, but he’s not affected in other areas. I’m grateful that technology now allows us to build a community and to give parents of newly-diagnosed children better information than, “Don’t worry about it.”

    Reply
  63. Thank you Reggie for wanting to spread word, and thank you and bless all of you who have posted (whether you have NF or not)…
    I am 17 and I’ve had NF2 for two years now…
    my father had it and died when he was 38 (I was 9). It was hard watching him as I grew up, and its even harder now not to compare myself with him. I will not follow the same path his disease took him. I have faith.
    My mom is very strong but I can tell it hurts her inside to know that her daughter has this disease, but she is amazing and faithful as well.
    God bless each and every one of you!

    Reply

Leave a reply

<a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <s> <strike> <strong> 

required