Neurofibromatosis (NF) is a genetic disorder of the nervous system which causes tumors to form on the nerves anywhere in the body at any time. This progressive disorder affects all races, all ethnic groups and both sexes equally. NF is one of the most common genetic disorders in the United States (one in every 3,000 to 4,000 births).
NF has two genetically distinct forms: NF-1 and NF-2. The effects of NF are unpredictable and have varying manifestations and degrees of severity. There is no known cure for either form of NF, although the genes for both NF-1 and NF-2 have been identified.
NF is an autosomal dominant genetic condition; it is not contagious. Approximately 50% of those affected with neurofibromatosis have a prior family history of NF. The other 50% of cases are the result of spontaneous genetic mutation. If an individual does not have NF, s/he can not pass it on to his/her children.
Joseph Merrick, whose condition was depicted in the play and film, The Elephant Man, is often incorrectly thought to have had neurofibromatosis. Merrick's condition has been identified as Proteus Syndrome, a disorder similar to NF, but unrelated. To learn more about Proteus Syndrome, please visit the Proteus Syndrome Foundation's website. http://www.nfinc.org/what.shtml
Growing up my mom and dad always thought I had NF, but I was not offically dignosed until 17. I have NF1 like my dad. I have most of my neurofibromas on my stomach and back. I also have learning disabilities, mild Scolosis, and a brain turmor,which is checked yearly. I often wish to find more people inmy home town I can get together with. I think this blog will be a great tool.
ReplyDeleteWell it's late and I better get to bed. Hope to hear from as many people with NF or those who know someone with NF.
ReplyDeleteI too was diagnosed at 17. No family history- mines the result of 'a mutation' and it was only discovered through surgery. the last couple of years have been an emotional challenge but have made me a stronger person.
ReplyDeleteI was diagnosed at birth funny thing doc never told my parents. He later told her nothing to be done for it and she would just worry. That was in 1969. I also like Terry have NF1 and a brain tumor too. We need to talk. DO you have any issues with it? I have the skin tumors and also the plexiform tumors(These can cause pain at times) Just had surgery on ski tumors. I would love to get a NF group together in my area. Need to see if there is interest. New York about 60 miles west of city interest?
ReplyDeleteMorning all. Gald to hear from everyone.
ReplyDeleteLife with Nf is always changing and like others who have NF1 or NF2 it can be an emotional rollercosters as some of us have found out.
My mom and dad did not worry with my NF so much, I think because they were not sure that I actually had it. No one else in my immediate family has it.
It was not until I was 17, my mom took me to the Dr. they did a CT Scan that they discovered the Hydrocephalus. They found turmor that was the cause. It is now the size of a small walnut, but there is nothing the Dr. can do, as it is inside the brain.
This is one thing I blame for my headachs. I also wonder if the depression is also a factor with NF.
Matchick, or for anyone else if you go to the Children’s Tumor Foundation online (another name for NF). You should be able to find a lot of support groups. This is the group my mom gets her newsletters from. Anyone can contact them to get information for the state the live or for the closest state that has a support group.
ReplyDeleteHere is there contact information.
Mailing Address
The Children's Tumor Foundation
95 Pine Street, 16th Floor
New York, N.Y. 10005-4002 Telephone: (212) 344-6633 or Toll Free at 1-800-323-7938 Fax:(212) 747-0004.
My NF is like I have fibroms on myc back and stomach, and my right leg is curved and little weaker so I must have a protection on it.
ReplyDeleteTeater, have they ever gotten larger as you were growing up? I had a few that did. The Dr told me that was normal. I sometime dont like it when my Dr tells me that it is noraml for these things to happen with NF
ReplyDeleteI would like to share a story with you all about a little girl named Mia who is try to get 1,000,000 fans on Facebook to raise awareness for Neurofibromatosis. Please got to her Facebook page and become a fan. Right now she has 8,288 fans. Search for Can-Mia-get-1000000-fans-to-raise-awarness-of-Neurofibromatosis She needs all our support!
ReplyDeleteGood morning all. Have to go in for another blood test for my Dr apt next month. Dr wants to check on my Thyriod. Fingers crossed, that all will go the way I want. I did ask the first time if this was NF related, they said no, but I'm still researching these.
ReplyDeleteI have Neurofibromatosis type 1, I'm from the Netherlands. It's in-portent to get more Awareness, for this disorder. Good blog cape writing
ReplyDeleteJust got home from work. Another long but very interesting day. Was so excited to tell all my friends at work about this Blog and hope they vist and or follow it. The more we can get rhe word out about NF the less people will be scared about it.
ReplyDeleteMorning all. Just found a new neurofibroma, on my stomach, kinda looks like a bruse. Hopefully it wont start hurting. When I go to the dr in Sept I will show her and see what she thinks. Of course, I will still do what if I decdide to get this one removed.
ReplyDeleteHas anyone ever been discriminated against because of their NF? I've heard some sad stories from people who were. I remember my teachers in school were verbally abusive because, I could not learn as fast as the other kids. Little did I realize it was due to the NF.
ReplyDeleteEveing all. Dr. went well. Still no change.
ReplyDeleteHas anyone ever experienced sudden weakness in your muscles? I've noticed at times that when I'm holding something in my hand I will lose my grip for no reason. Or my legs will all of a sudden give out on me. It does not happen often but I hate it when it does.
ReplyDeleteI was watching the Early show this morning and they had the most awsome story. It is about a Yale student who needs a stem cell transplant. Her name is Mandi and her facebook page is called Become Mandi's Hero. You all should check it out.
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ReplyDeleteHere is some information from one of the NF Facebook page for Wyo. It's a bit long.
ReplyDeleteIf you would like further information on the Wyoming Affiliate and how to get involved, host an event, or connect with local NF support please email us at wyomingnf@ctf.
"Wyoming Working Girls" Book signing in Honor of NF Heroes
Duane Ray and Christopher Ray Nagel
For further information please contact: Affiliate Representative Marette Nagel
wyomingworkinggirls@yahoo. To read more about Marette and her dedication to CTF go to http://wyomingworkinggirl.blogspot.com/
For more information on local affiliate events, please contact:
Wyoming Affiliate Representative
Marette Nagel
PO Box 1817
Dubois, WY 82513
Phone: (307) 455-2563
Email: wyomingworkinggirls@yahoo.com
What was the most inspirational movie you saw amd after watching it you decided to say “Yes, I can be part of making a difference for someone?” One of the movies for me was Mask starring Cher. This movie helped to open my eyes to not judge others on their appearance. What was the most inspirational movie you watched and afterwards you decided to say “Yes, I can make a difference in someone’s life." There should be a movie made about people living with NF.
ReplyDeleteToday, I was lookng up some infomation on NF and found something very interesting. It was about bone deformity. I never really thought about it much or how it can affect someone with NF. Scary, how something so small can be so big.
ReplyDeleteI just got a flyer in the mail from the Colorado CTF for the 2010 NF Symposium. It's Sunday 10/03/10. I'm hoping to go.
ReplyDeleteWell first day of my last vacation for the year and it is once again filled with Dr. apts for my NF. I hope this time the dr. will listen to what I have to say and actualy do something. Fingers crossed. Will let everyone know if there ae any changes.
ReplyDeleteOk, all this is really weird. I realized this late last night. On Aug 29 -90 my dad died. and 20 years later I got baptized on Aug 29.
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