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Newly diagnosed with NF1
Information and support for anyone recently diagnosed with neurofibromatosis type 1 (NF1).
Swimming in england
- By whoseyerdaddy · New reply yesterday at 11:11 pm
- 11 replies
- hey just an idea but i hav not been swimming since i was about 13 because i hate my body and have lots of marks on my chest, maybe other people with same problem could all arrange to chip in and see if ...
When did you get dignosed with NF ?
- By xxpearlkellyxx · New reply November 19, 2009
- 46 replies
- When did you get dignosed with NF ? xxx ...
Can anyone please tell me what the fibroma looks like?
- By DWNF · New reply November 17, 2009
- 10 replies
- My daughter is 8.5yrs and is still in the process of being diagnosed....she has groin freckling and 7 Cals, I have recently noticed a small round hard lump on her left ear...it has a white ish look about ...
How do I get a Doctor to give me a definite answers about NF?
- By TSCAwareness · New reply November 12, 2009
- 8 replies
- I have a 9 year old son who has Tuberous Sclerosis. He was diagnosed with TSC when he was 14 months old. He has some 'newer' skin manifestations that are sending up little flags with me, and NF is something ...
What do freckles look like?
- By mummydear · New reply November 12, 2009
- 11 replies
- can anyone out there help me? my 6 month old son has 3 cafe au lait spots. 1 is too small to meet the criteria. i recently noticed some faint spots at his right groin. they actually start out like little ...
My Daughter Start a trouble speech?
- By zhanie · New reply November 12, 2009
- 12 replies
- My daughter i've notice this fast few days. my daughter have a trouble speech? my daughter is now 4yrs old, she is newly diagnosed for NF last May 23, 2009. Did you experienced about that ...
Is it possible to have NF without cafe au lait spots?
- By DWNF · New reply November 10, 2009
- 10 replies
- My daughter is currently being tested she has 7 cafe au lait spots and lots of freckling. My question though....has come about as I learn more about NF. My son who is 5 has glasses and a turned eye (that ...
Oh where oh where can my Avosil be?
- By baileysboots · New reply November 7, 2009
- 11 replies
- After hearing some were trying a OTC topical cream AVOSIL for tumor reduction, I tried several Pharmacist to see if they stocked the product. Most said "HUH??" never heard of it, by itself or mixed with ...
Michigan????
- By Jpetre · New reply November 7, 2009
- 8 replies
- I am moving back to Michigan and in need of a good Doctor. I am in the middle of trying to get a diagnosis and I am looking for a Dr. who may have a clue what NF is. Frustrated, anxious and in pain, Jennifer ...
NF1 Gene Deletion vs. Mutation
- By steph1of9 · New reply November 5, 2009
- 13 replies
- My 2 yr old daughter had her initial appointment with the genetics clinic at Seattle Children's hospital this Thursday. It went well and the drs there were so nice. So our daughter has her official diagnosis ...
Why does my thort hurt is do to nf
- By EdwardCullen · New reply November 1, 2009
- 3 replies
- Why dies it hurts all the time to shallow and touch it ...
My daughter had her Ophthamologist appt today!
- By DWNF · New reply October 20, 2009
- 1 reply
- Well not diagnosed yet......we are still in the "think she may have it catagory". The good news is...no sign of Lisch Nodules and the optic nerve looks good, he is really happy and asked to see her in ...
My Son Has NF 1 My husband and I just recieved our blood work back we a
- By bmeyer17 · New reply October 17, 2009
- 18 replies
- OK a question for you all. My youngest child is 6 and has been diagnosed with NF1 he has many cafe oles and severe scoliosis which all doc say isn't related. He has a 35 degree curve and is braced in ...
Can pseudoarthrosis present it self at any time?
- By DWNF · New reply October 17, 2009
- 5 replies
- My daughter is 8 and does not have pseudoarthrosis but I was wondering if these types of things can also develop at any time? I have noticed most who have pseudoarthrosis seem to be born with it or diagnosed ...
Rashes...???
- By Jpetre · New reply October 5, 2009
- 4 replies
- I have formally not been diagnosed yet. Very frustrated. 43 years old. Pain for last year. MRI on neck shows cervical Spyndylosis, and a cyst or tumor on my spine, not cancerous (doesn't light up on images ...
Range of severity, statistics?
- By Rebeka · New reply October 4, 2009
- 20 replies
- Hello NF community. I may post a photo of my daughter and myself soon. I am actually pretty nervous and scared realizing the difficulties associated with NF as the disorder has been diagnosed upon my ...
Bowed Legs
- By Manhatchie · Posted October 3, 2009
- 0 replies
- I wanted to ask about bowed legs in babies. My son is 3 months an has the cal marks and his tibia (legs) are bowed like apex out only, not front or back. The x-rays recorded as Tibial Bowing IV with no ...
Hoping for answers
- By Tina-Somers · New reply October 3, 2009
- 8 replies
- Hello, this is the first group I've joined. My five month old daughter has not been diagnosed with NF but I have recently noticed CAL spots popping up on her legs. They start out very small, in fact I ...
new to nf1
- By momofnf1 · New reply October 1, 2009
- 16 replies
- just joined yesterday. my 6 yr old daughter has nf1 and so far no major problems. i am being told that she could be so mild that she may never have problems. Is that true? can it be that mild? Everything ...
Anyone in NW Indiana
- By Bern123 · New reply September 30, 2009
- 11 replies
- I think my daughter has NH1. She only has the cafe marks. She is 12. I am scared for her. I would like to meet someone by me who is experiencing NH1 ...
