Discussions
- By mellymel · Posted 1:45 am
- In Living with NF1 · 0 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 Calebmyboy · Posted yesterday at 3:00 pm
- In NF1 and children · 2 replies
- I have a 5 year old boy with NF1 and have been trying to find a NF specialist on the West coast (we live in Las Vegas). Can anyone help with some info.?? Thanks ...
- By Steeler_fan_Roger · Posted yesterday at 1:50 pm
- In Off-Topic · 6 replies
- My wife died two years ago from complications related to NF at the age of 31. Now my eight-year-old daughter has a large bump on her forehead and another small one on her lower lip. My feeling has always ...
- By Noelle · Posted yesterday at 7:32 am
- In Living with NF1 · 4 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 sallyann · Posted yesterday at 12:12 am
- In Living with NF1 · 7 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 MaggieC · Posted November 19, 2008
- In Off-Topic · 1 reply
- Not quite off topic as my beloved aunt and godmother and her daughter, my big cousin, my favorite cousin have NF. The tumors did not appear until my aunt (deceased now for over 30 years) was in her late ...
- By oatmeal · Posted November 19, 2008
- In Living with NF1 · 1 reply
- does anyone very have burning sensations on there skin? What helps ...
- By lildiamond1989 · Posted November 19, 2008
- In Living with NF1 · 5 replies
- Hi My name is diamond and i am 19 year old i have nf1 i just joined this website and i just have one question to ask what make the tumors grow ...
- By froggy · Posted November 19, 2008
- In NF1 and children · 0 replies
- i inherited nf1 from my mom. i have 3 sister with it, 2 brothers with it5 nieces n4 nephews with. also my two girls have it the promblem is my youngest is going blind from it n will b needing chemo ...
- By banana1946 · Posted November 19, 2008
- In Off-Topic · 4 replies
- Hey Everyone, So I hope I don't step over any boundaries or personal space in asking this question, but I have to know if its just me, or if its a part of NF. I was diagnosed with NF1 at 3, I am now 28 ...
- By hodson · Posted November 19, 2008
- In Living with NF1 · 1 reply
- I jast wanted to till you tat I had my n.f. bombs removd and had no problems ...
- By shellbell4045 · Posted November 18, 2008
- In Living with NF1 · 1 reply
- I have seen commercials about Dove having a program for girls in school teaching them about their inner beauty and to not look at what society says, if we could find a way to have dove hook up with the ...
- By Saudia · Posted November 17, 2008
- In Living with NF1 · 11 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 ...
- By IvyO · Posted November 17, 2008
- In Newly diagnosed with NF1 · 3 replies
- My name is Ivy. My child was born with the cafe spots (about 30 of them) and at first I didn't think anything of them. I decided to do some research online just about having multiple birth marks (At least ...
- By NFADULT · Posted November 17, 2008
- In NF1 and children · 6 replies
- Sorry I have been out of touch for a while. My Father passed away last week. Things have been a little crazy. It was one of those things where you knew it wasw going to happen...but not quite this soon ...
- By Jordy · Posted November 16, 2008
- In NF1 and children · 0 replies
- I am interested to hear if anyone has or knows of a child that has had the McFarland Bypass done to correct psuedoarthrosis. This surgery uses a cadaver fibula and is implanted in the curved tibia ...
- By carlock26 · Posted November 16, 2008
- In Off-Topic · 5 replies
- Hi everyone I'm new to this site, and I'm creating a newsletter for my biological science class on Neurofibromatosis. I have researched the disorder but I need a more personal description of the way it ...
- By kala · Posted November 16, 2008
- In Schwannomatosis · 0 replies
- I have had problems since i was 15 with pain in my leg.When i was 18 after years of tests which showed nothing (before mri) and after being told i was imagining everything, they decided to do operate ...
- By nfsteph1977 · Posted November 16, 2008
- In Living with NF1 · 0 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 ...
