neurofibromatosis cafe

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

PERSONS WITH NF1 OR NF2

My message this morning includes all my friends, that have a concern with both types of nf. We can support one another. I received a very nice message that prompt me to post this note. this person, has nf2. I was so happy to read the email. The concern was that he has nf2 He may have felt left out. I hope not. Please know, I would like to hear from anyone who has both types of nf, concerned family members, and friends. Lets start posting. I would like to know you are there. Your post may very well help some one. All of you are teling me what a help I have been. Well all of your emails and comments have really made me want to do more. Thank you for supporting me.

Make it a tremendous day

Reggie

March 12, 2007 - Posted by | A MESSAGE FROM REGGIE, neurofibromatosis

9 Comments »

  1. Hi my name is Bea and I have NF1, I have lost my right leg below the knee, I have scoliosis, and a deterating spine. I use a wheelchair 90% of the time.. I’m a single (divorced) mom of two wonderful daughters. ages 10 and 12 .. my 10 y old has NF1, ADHD, Autism, Senosory Intergration, Asthma, Refulx, low vison, migranes.. she is 4 foot tall and 49 lb and in the 5th grade. My 12 y old has NF1, ADHD, Autism, Mild CP in legs, High Blood pressure (they dont’ know why).

    I am considering moving to Texas.. looking for better medical care for the girls and treatments, and schooling with thier autism….

    I have yahoo im mom2nfautism , aol im mom2nfautism fell free to contact me on one of those just let me know its from NF.. or emial me mom2nfautism@centurytel.net

    Comment by Bea | March 12, 2007 | Reply

  2. Thank you Bea, I hope someone reads your post. Let’s hope that someone can help direct you to get the help you need. My best to you and your family. Stay tune in.

    Comment by Reggie Bibbs | March 12, 2007 | Reply

  3. Bea, Bless your heart!!! Are you getting any support from any of the NF organizations? Where do you live, what state?

    Comment by adgiant | March 13, 2007 | Reply

  4. Thank you and to answer your question…. NO no support at all from any NF organization. No support of any kind in ark. My folks help me when they can. but my mom has NF and is having problems with her arm now. and her arm is in a sling.

    Its just me and my girls. my ex has supervised visits and when he’s around their behavior gets worse. No one around here knows hardly anything about NF. like they did a mri on my 10 y old and said there were lessions in her left and right cellerburm.. 5 years ago they were just in her right side. but they were like no big deal…. she is only 4 foot tall and 49lb and has migines. could it be the lessions but they say they dont’ know.

    Comment by Bea | March 13, 2007 | Reply

  5. and Arkansas is where i live. sorry

    Comment by Bea | March 13, 2007 | Reply

  6. Wow! Any place in the near Arkansas that knows something about nf?

    Comment by Reggie Bibbs | March 13, 2007 | Reply

  7. YOUR 1 SUPER COOL GUY TO DO THIS, I ALSO HAVE NF

    Comment by NANCY | March 22, 2007 | Reply

  8. Thanks Nancy. All the wonderful comments fires me up. It make me want to try even harder. I hope you stay abord. we are fighting the same battle. We need help with both nf1 and nf2. 🙂

    Comment by Reggie | March 22, 2007 | Reply

  9. I’m am leaving early in the AM to go to Tenaha Tx for saturday and sunday, then I leave monday to go to Wills Point Texas from monday all week and leave for home on Sundy the 1st of april. Checking out schools in wills point next week and housing Looking at moving to Texas.. if anyone has any ideas on schools that work good with speical ed and speical needs let me know. Bpth my daughters has NF1, ADHD, and Autism and attend special education. wont be back on line till April 1st but will try to borrow a computer to check messages. lol tc and be in Texas Tomorow.. lol

    Comment by Bea | March 23, 2007 | Reply


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