neurofibromatosis cafe

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



I just wanted to drop you a line and say how great you are! I have NF1 too and although it’s not too severe other members of my family have it pretty bad. Having the disease isn’t fun and the tumors cause a lot of pain. It doesn’t help that doctors over here in the UK know so little about it, I feel I’m teaching them sometimes! It’s put me off having children so I think I’ll stick to dogs!
I saw your video on You Tube and had a look at your website. It’s very cool and I loved the photos too. You have a gorgeous family and a good group of friends.
If one thing NF has taught me it’s never to judge anyone on the way they look and I get so mad when I see it happen on the tv or in the street. Anyway, congratulations on all that you have achieved and for making people more aware. You are an inspiration!


Best wishes,



April 27, 2007 - Posted by | Appearances, Friends, neurofibromatosis | , ,


  1. Ok, Reggie, fess up, Kim is a relative of yours that you paid to say nice things about you! Admit it and Jerry and I will go easy on you. Maybe.

    Comment by adgiant | April 28, 2007 | Reply

  2. Just look at me. And think about what a wonderful person Iam. you met me. Now ask your self. Would a wonderful person like Reggie have to pay a person to say hi? I didn’t think so.

    Comment by Reggie Bibbs | April 28, 2007 | Reply

  3. Well… I think Kim is very intutive, she says he has a “GOOD GROUP OF FRIENDS”.

    Comment by Jerry T | April 28, 2007 | Reply

  4. Blush.blush, how did she know?!!!!

    Comment by Jerry T | April 29, 2007 | Reply

  5. First of all I would just like to say Reggie you are an amazing man, I wish I could have half the courage you have. This next bit is for Kim, I know exactly what you mean about doctors in the UK i have to commute to London every year for check ups, and please dont let NF get in the way of you having children, it may be a 50/50 chance but at the end of the day, if the child has NF then he or she will have you there to support them, I have a little boy who is 17 months old, if/when the time comes that he is diagnosed I will be there to help him through. I just wish my mum had that support and knowledge when she was pregnant with me.

    Comment by Mary | April 29, 2007 | Reply

  6. Mary, welcome to the blog! Tell us about yourself. Where do you live? What type NF do you have? How did you hear about Reggie? What would you most like to get out of this blog? So happy to have you join us!!!

    Comment by Lou | April 29, 2007 | Reply

  7. Mery I think wrote you a message from youtube. You are so kind. I’m not strong as you think. What helps me are the family and friends I have in my life. They are always incouraging me. Its something we have to work on daily. You can do it. Please write me here or direct. I will always answer. We can support each other. Hope to hear from you again.

    Make it a tremendous day!


    Comment by Reggie Bibbs | April 29, 2007 | Reply

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