neurofibromatosis cafe

A place to talk about NF, have fun and share.

Disfigured man with neurofibromatosis launches “Just Ask!” campaign!

Reggie Bibbs has lived with neurofibromatosis (NF) all his life. NF causes tumors to grow throughout the body sometimes causing pain, disfigurement and even death. Because of his disfigurement, Reggie has led a fairly sheltered life leaving the house only to go to places where people knew him. Well, until now!

read more | digg story

May 21, 2007 - Posted by | neurofibromatosis | , , ,


  1. you should start a Face book page if you haven’t already! God bless you! ❤

    Comment by Therese | March 16, 2011 | Reply

    • i have nf1 and i went all through school and no one knew i had it and now i let people know i have it i am great full to god that so far my kid’s have no sings of it even thiugh my case is not that bad i am still scard of waht is to come in my life

      Comment by constance swinford (lequire) | March 10, 2012 | Reply

      • and i have a face book just look and it looks like i dont have it but i do

        Comment by constance swinford (lequire) | March 10, 2012

  2. Dear
    Reggie, I hope you received this email and I hope it gets to you because I watched your program. I hope to meet you through this posting an I hope you will e-mail me so we can be friends.
    My email address is, please email me as soon as possible.
    Your new friend I hope, Pat Cardoza

    Comment by pat cardoza | May 15, 2011 | Reply

  3. I don’t know if you’ll read this but: Dear Mr. Bibbs, Your strength has inspired me. Your battle against NF, and the strength you face it with amazes me. I think its great what you have done with the Just Ask campaign. You have no clue just how big of an impact you have on others. You’re wonderful. Thank You Reggie. You are a true hero.

    Comment by Dakota Nowak | May 24, 2011 | Reply

    • Wow! I’ am so encouraged by your bravery to speak out about NF and raise awareness, your efforts have not gone in vain but has spread all the way to the tip of the world to South Africa- May God bless you. Hope you make it all the way to our part of the world to talk about NF 🙂

      Comment by Luyanda | February 25, 2012 | Reply

  4. Reggie, I was up last night and a show on TLC was on and I was listening to your story and it hit me hard. It reminded me of my Grandmother who died two months ago from a ten year fight against breast cancer. It brought tears to my eyes and I wanted you to know that your fight against NF tumors along with some truly disrespectful people that you might have come across on your journey of dealing with this hardship, made me realize that even though I do not know, and even though I have never met you or talked to you, I truly respect and care about you from the bottom of my heart.

    Comment by Taylor Whitney | May 25, 2011 | Reply

  5. i feel sooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooo so so so bad for you

    Comment by haley tie | June 9, 2011 | Reply

  6. Hey Reggie, you know at times i think i face the biggest problems in life. I used to think God had a certain grudge against me, and then I came across your documentary on National Geographic.. I want you to know that though I haven’t met you, you are a life saver. There was actually a point of time when I was ready to suicide and put an end to all the menace. But then it occurred to me, you are facing problems which are way worse than mine.. You stand strong and the way you decided to take that flight in the documentary to meet a guy with the same problem is just amazing.. It really you know kinda pumped me up.. I would really like to be your friend and help you out in any way possible.. As long as there is hope, u must keep going.. Not for me, but for your family.. Once u make it through this ordeal, there is a better life that awaits you and a beautiful woman who will love you no matter what..

    Please mail me, my email id is I am an Indian, and India is known for its doctors and cheap medical practices. I would love to go around asking doctors for advices and even help for you. Just get back to me.. And i don’t know if you have heard this song, but I want you to hear it if u haven’t. Its called ‘Beautiful’ and the artist is Eminem. Please hear it, its definetly gonna boost your morale.

    Till then, please take care and play safe.

    Comment by Mohit Mandloi | July 22, 2011 | Reply

  7. Hi Reggie,
    my names Amy and i have watched your documentary. To all the people that have NF, don’t be afraid of who you are or what you look like and never be ashamed to show yourself in public.
    Im only 17 and don’t know much but i deffinetly know that everyone is unique whether they have a disorder, a disability or those who are just plain , just know there are people out there that care 🙂

    take care and be safe,
    love from Amy

    Comment by Amy | October 28, 2011 | Reply

  8. You are truly amazing !! God Bless !!

    Comment by Chantay | November 23, 2011 | Reply

  9. Hello, mr bibbs. I saw a documentary about you on the dutch television !! And i wanna say that i have a lot of respect for you and i know a lot of people think the same way !

    Comment by maxim happe | January 22, 2012 | Reply

  10. Dear Reggie,

    I am moved beyond words by your positive and spiritual outlook on life and the circumstances you’ve dealt with. I hope you know that I feel God has blessed your heart with the ability to communicate love, caring and acceptance in a world that rewards the opposite.

    I pray that you read this and know that I admire and respect you immensely and wish you nothing but love and kindness.


    Todd K.

    Comment by Todd | February 8, 2012 | Reply

    • hola me llamo gabriela y tengo 7 años lamento la cosa q te paso pero te prometo q te mejoraras y mi mama cinthia ella dise q tu vida sige adelante por q es verdad tu vida sige adelante puedes salir y ignoras a las personas q te ablan feo sabes q te apollo chao

      Comment by gabriela pier domenico | May 15, 2012 | Reply

    • Dear Reggei,
      I hope you get this post. I post this because i have seen your documentary show on National Geography. I am very inspired by this. I hope we will meet soon & this is my e-mail adress for facebook –
      & for gmail –
      Hope we will talk for sometime.

      Comment by Naved Chauhan | June 28, 2012 | Reply

      • Hi Naved,

        Sorry for the delay in my reply. Thank you for the kind words, and for taking time to watch the documentary. I’m encouraged and I feel that things are better then they have ever been for me. I enjoy spreading awarness of nf, and meeting new friends. Please write anytime. I will be happy to hear from you. Thank you.


        Comment by Reggie Bibbs | June 28, 2012

    • hai reggi i am kanagharajh,from sri lanka.i am now watching ur discovery programme.don’t worry take it easy.god bless you.bye

      Comment by kanagharajh | October 2, 2012 | Reply

  11. Dear Reggie,
    I have watched you on TV and I didn’t see a monster in you, instead I saw a man who loved life and everything about it.The people who have both physically and verbally hurt you are mean and cruel. I wish there is something more that I can do to help support NF.I just hope that you know that many of us are behind you.

    Thank you,
    Gianna S.

    Comment by Gianna | February 10, 2012 | Reply

  12. I’m sorry I forgot I am 10 years old so therefore stopping me to do much but I send all of my love and best wishes.

    Comment by Gianna | February 10, 2012 | Reply

  13. Dear Reggie,

    I saw the documentary about NF on Dutch television. And I was really moved while watching it.
    You are a very special and sweet person and I (like also a lot of other people I read) have a lot of respect for you and the way you live. And that is what is so important in this world, caring for – and respect each other, and having the possibility to have a good and full life also when a person is a bit “different ‘ from the rest. And I hopeand know you’ll have a good influence on people who also struggle with something difficult in their lives.

    I wish you all the luck in your further life. And if you would like to reply to this pls do!
    You can always email me about your life or whatever you would like to email about.

    Best regards from Elisa

    Comment by Elisa | February 17, 2012 | Reply

  14. Saw you on a tv show tonight on channel 4 and I was truly touched by you. I think you are a lovely and selfless man with a one of the kindest hearts I have seen. Keep doing what you do. Seeing such a lovely person really makes it hit home that in a world of such greed, selfishness and thoughtlessness there really are still beautiful people out there. Take care. Lea, UK.

    Comment by Lea | July 10, 2012 | Reply

  15. A true source of inspiration. Thanx man. .wil b with u in our prayers. With love from zimbabwe

    Comment by Zvikomborero | February 14, 2013 | Reply

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