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Dizziness
- By jrlogue · New reply yesterday at 10:54 pm
- Discussion in Living with NF1 · 1 reply
- I was diagnosed with a brain tumor when I was 11 as well as an optic glioma in my right eye. The only problem that Ive ever had is headaches and blindness in my right eye. Last year, I had some dizzy ...
Hi I am new
- By Andrew1994 · New reply yesterday at 10:39 pm
- Discussion in Living with NF2 · 4 replies
- My name is Andrew I'm 18 , i am confined to my bed and I would like to make friends, who know what I'm going through. I'm a little shy and I'm new to this ...
NF-1 Support
- By gingerlady · New reply yesterday at 10:02 pm
- Discussion in Off-Topic · 7 replies
- I have a daughter who is 13 and has a very mild case of NF-1 and would love to find kids of the same age with whom she could talk to about it. Please reply if you are interested. Thanks Phil ...
My son has NF1, I'm so depressed I can't sleep or eat
- By Depressedfather · New reply yesterday at 8:46 pm
- Discussion in NF1 and children · 39 replies
- New member here.... My son who is 9 years old was dx with NF1 when he was 5 years old. He has very mild scoliosis, many cafe spots and some learning disabilities. His learning disabilities have just came ...
Fundraising for NF
- By Elisha_Alan · New reply yesterday at 8:40 pm
- Discussion in NF1 and children · 4 replies
- A friend of mine has entered into a painting contest with her awesome painting of Reggie Bibbs. If she wins all the prize money will go to supporting his charity! she is so close but needs a few more ...
I am afraid that I will lose the use of my arm
- By Rosen · New reply yesterday at 8:19 pm
- Discussion in Living with NF1 · 3 replies
- I am becoming more and more afraid now that I am going to lose the use of my arm due to nf1. I have already had two surgeries to cut down on them to save my arm, and the neurofibromas have grown back ...
My life
- By KristinaMarie23 · New reply yesterday at 7:59 pm
- Journal · 19 replies
- Hey I'm KristinaMarie.. I have nf1.. I feel like I'm different from every other girl out there and I ask my self everyday why can't I look like all these other girls and not have all these marks and lumps ...
hello everyone
- By babs8301954 · New reply yesterday at 7:03 pm
- Discussion in Living with NF1 · 2 replies
- would like to meet others with nf that live in n.c. that maybe somehow we could meet up somewhere ...
Thoughts for Worried Mom
- By ams_t · New reply yesterday at 7:02 pm
- Discussion in NF1 and children · 20 replies
- My son is 22 months old and is of mixed ethnicity (Asian/Caucasion). A couple of months after he was born, one cafe au lait spot appeared that is a flat oval, about 20 mm long. No other spots popped up ...
Opinion's needed
- By Depressedfather · New reply yesterday at 6:51 pm
- Discussion in NF1 and children · 7 replies
- My 9 yr old son, along with his NF1 has a pectus cavitus (sunken chest). We can get this fixed by having a surgery done called the Nuss procedure in which they put him under, make a two inch cut on both ...
neurofibroma wrapped around carotid artery
- By jolie0923 · New reply yesterday at 5:13 pm
- Discussion in Living with NF1 · 3 replies
- I just had 3 MRIs and 2 CT scans in April and they found a 5cm x 3 cm cyst wrapped around my carotid artery. I had the same surgery 20 years ago but lost 5 units of blood and almost died. I am really ...
neros in ear
- By AmberMarie88 · Posted yesterday at 3:47 pm
- Discussion in Living with NF1 · 0 replies
- can tumors in your ear be removed ...
Worried about the diagnosis
- By Gemmaworriedmum · Posted yesterday at 3:25 pm
- Discussion in NF1 and children · 0 replies
- Hi Thank you so much to anyone who can give me any information at all. My son was born with just x2 cafe spots which were quite large but not too large, he was sent to a ped when he was 2 years old as ...
nf1 pseudarthrosis of the tibia
- By felicityv · Posted yesterday at 3:08 pm
- Discussion in NF1 and children · 0 replies
- hi, can anyone tell me if theres any cure for pseudarthrosis of the tibia as my son has had so many ops but to no success.. still trying and still going strong with my support and perseverance.. hping ...
pregant
- By reneehanna313 · New reply yesterday at 2:56 pm
- Journal · 20 replies
- so i went to the hospital last nite and found out that i was with child. This is will be my first child and I'm so scard to bring a child in to this world that has a great chance of having nf i don't ...
Watch spots on MRI
- By 25Evamarie · Posted yesterday at 2:19 pm
- Discussion in NF1 and children · 0 replies
- Our family has NF1 my grandfather had it and died from a tumor along his heart. My aunt died of a brain tumor and my mom has had brain tumors for the past 8years (inoperable) I just found this out. I ...
MRI Schedule Changed
- By AshleysDad · New reply yesterday at 1:48 pm
- Discussion in NF1 and children · 2 replies
- Ashley's oncologist says Ashley's optic glioma has been stable for long enough to switch her from an MRI every six months to every nine months or maybe even once per year. I hope it’s once per year ...
Still don't know what's wrong
- By Sanoko · New reply yesterday at 1:43 pm
- Journal · 13 replies
- It's been 2 to 3 months and I still don't know what's wrong with me. I constantly have pelvic pain and bloat a noticeable amount for a week or 2 and then it goes down only to come back in few weeks. I ...
hand pain
- By dotqueen · New reply yesterday at 12:02 pm
- Discussion in Living with NF1 · 11 replies
- Hi. I am starting to get terrible pain in my right hand. I was wondering if it can be arthritis a small tumor pressing somewhere or carpel tunnel. I have fibromyalgia besides the nf... The hand pain is ...
Plexiform GONE!!
- By LandensMommy · New reply yesterday at 11:01 am
- Journal · 19 replies
- Its been three days since my surgery of my tumor and I feel liek a new woman! Im doing well, surgery went great and Im soooooo happy its gone ...
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