Share your story, find support and information, and discuss symptoms and management of neurofibromatosis type 1 (NF1).
- By mellymel · New reply 2:19 pm
- 5 replies
- Hi GUYS Thank You Guys for Being there when I need answers andmoral support . I Thought it would be nice to inform you I had surgery on the 11/12 for removal of NF in my back. I had about 30 of them removed ...
- By NFADULT · New reply 12:03 am
- 18 replies
- Does anyone have more than one type of NF? Like NF 1 and NF2 or schwanomatosis. Just curious. I am told it is very rare, but it does happen ...
- By sallyann · New reply yesterday at 10:32 pm
- 13 replies
- As a mother how do you feel knowing how hard it will be when you know all the thing your child will have to go through the older he or she get ...
- By Aussierock · New reply yesterday at 10:27 pm
- 5 replies
- Does anybody have any ideas how to relax Something i have never been really able to do Dont know if its an Nf trait..probally though!! Im Always Tense Help ...
- By grannyj · New reply yesterday at 7:18 pm
- 2 replies
- Recently my 5 year old grand son was about to lose his first tooth. He has some developmental difficulties, and was scared about it coming out. So I sat down with him and looked through my old picture ...
- By oatmeal · New reply yesterday at 7:05 pm
- 17 replies
- I have very dark circles under my eyes. was wondering if any one else with NF does. My dad also had them and he had NF also ...
- By nfsteph1977 · New reply yesterday at 5:44 pm
- 3 replies
- recently moved here from Ca and I am looking for others in or aroundmy area...I lie in Ponca city Oklahoma. I have nf1 and am all alone here ...
- By cami1967 · Posted yesterday at 3:05 pm
- 0 replies
- Just wanted to post this link. I have seen a few discussions about people not being able to find someone who will remove tumors. I know there are at least a few people on the ctf.org site that have gone ...
- By swtlilwamom · New reply yesterday at 1:32 pm
- 14 replies
- I was wondering if anyone has these little red (blood filled) bumps...my brother who has NF has them--hundred of them all over his body---they bleed really easy, bleed A LOT. I have a few also -- Along ...
- By grannyj · New reply yesterday at 9:41 am
- 8 replies
- I have some pain, but this itching! Does anybody have problems with itching and what do you do to get relief ...
- By lovely38 · New reply November 29, 2008
- 9 replies
- While I continue to do my research on this type of tumor I will keep you guys updated on my findings. Although none of you have been diagnoised with one of these tumors and I pray to God that you never ...
- By grannyj · New reply November 28, 2008
- 5 replies
- I haven't been able to see a doctor with NF knowledge on a regular basis. I was diagonsed 25 years ago by an internal specialist I was seeing for something not related to NF. He told me what it was. My ...
- By Tlam72 · Posted November 27, 2008
- 0 replies
- Can you get the medical card for nf1 We have ins but it is 80 20 Hubby and i both work but i just do not have the 20 And that makes me not want to go to the doctor . Just would like them to pick up the ...
- By Noelle · New reply November 26, 2008
- 15 replies
- Here's a kinda weird question. When I take a shower, I like the water "HOT". My husband says it is like a sauna in the bathroom when I'm showering. When Sam was having alot of back pain, he would take ...
- By svitla_ya · New reply November 26, 2008
- 5 replies
- Any-body knows old people with NF-1, not having other displays of illness, except for CAL spots ...
- By Aussierock · New reply November 24, 2008
- 6 replies
- Ever since i could write i have had very messy hand writting. My hand shakes Some times i find a pen that makes it neater Never take note of the brand though The thicker the nib the better ?????? I should ...
- By Aussierock · New reply November 24, 2008
- 2 replies
- Does Anybody else have this problem? My earliest memory of this goes back to when i was 10 learnig Karate I could never remember all the moves Im now 46 and still to this day have no change of remembering ...
- By Annie02360 · New reply November 23, 2008
- 11 replies
- anyone have any tricks that they use to hide tumors, the older I get the more I seem to get. I'm going to have to start wearing turtle necks and long sleeves all the time. I can get away with it in the ...
- By arbitrarist · New reply November 23, 2008
- 5 replies
- Hey now; I just moved to Boston from New JErsey and I getting real depressed lately. I'm 21 and working at Target over night. I am going to go to college in the winter. I just feel like a loser sometime ...
- By Saudia · New reply November 23, 2008
- 15 replies
- I have NF1 rather midly, I do have the lumps and bumbs on my body, allong with the bith marks (cafe-au-lait spots) and frecles and moles, and was wondering wether I'll be able to get a tattoo either over ...
