Needing advice

Hi everyone hope your all well today, this cheeky picture is of my darling daughter ruby and she is 2 years old, she was only 4 months when we got told she had nf1 and Before then we had never…

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Katiegalloway
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I have a tumor on my neck that is hurting. I am going to see the doctor about it but I want to know if anyone else has experienced a tumor hurting and what came of it. I've also been experiencing dizziness…

Lorraine Michael Cowin Shaner
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I have just purchased a small bottle of cbd oil from Holland and Barrett, wanting to come of my medication for neuropathic pain. Has anyone else used this and successfully come off or at least lowered…

Alexandra Rayner
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Emilio’s Mummy

Hi Everyone,  How are you all today? Emilio is doing pretty well at the moment..dare I say it? His skin is itchy and he has daily pain but he always smiles and keeps on going. We use a wheat bag and…

MelS
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Bake off day 11

start of the bake day after coffee morning

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Gedb99
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hair day

Day three of fundraising 

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Gedb99
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Hi everyone, I hear some people use turmeric which has been known to shrink tumors. The stuff online seems to mention the shrinking of malign tumors but I wonder if it would have any effect on NF ones.…

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Rae Bate
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https://sway.com/SURliIwzm9Lh2Orx?ref=Link&loc=edit this a link to a story I have wrote concerning how my wife is effected

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Gedb99
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Hi All ladies with NF! I have alot of bumps on my face and body and get very upset when I go clothes shopping and see low neck tops and pretty dresses I am too self conscious to wear.  Do you…

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Julia
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https://goo.gl/photos/v9o9XECajmkDzxwb8 ​taken at our fundraising event yesterday whereby we raised 40 pound on the day but in total so far we have raised nearly a hundred pound

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Gedb99
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New NF2 member!

Hi! It is quite reassuring that you are there to share experiences, concerns and great news! Best wishes for all!

Plato
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Hi everyone, I hope you are all doing great

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alicookie
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NF selfie

Come on friends get on  Twitter and social media and get stars past and present to do a selfie with our poster for World NF Awareness month 

Diane
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FRIEND REQUEST

I AM HAPPILY MARRIED WITH 2 YOUNG ADULTS WITH DISABILITIES. MY DAUGTHER IS 19YEARS AND MY SON IS 17 YEARS. LOOKING FOR FRIENDS...

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Hatchi
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Photo Competition Winner

We would like to apologise for the delay, but we are now able announce the winner of the photo competition! Congratulations to Tineke Montague! The team here at Head Office felt this photo was…

admin
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My son harvie

This is my son harvie he is 3 and has nf1 he is a brace strong little boy and has been through a #### of a lot. We have currently found out that he has a second brain tumour  and just waiting to see…

Sophia and harvie
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Tiredness

Hi Everyone quick question to you all.Does anyone else find they can get very fatigued. I have been alot lately and wondered if anyone else experienced it.x

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Sharky
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I am happy to finally find this page and community, i never know that a name exist for this terrible thing, my dad lived and died coz of this too without know that it has a name and exist in other continents,…

Nwachinemere
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Sharky

Hi Everyone I have lived with NF1 all my life my 4 year old little girl also has it. She's having brain scans every six months. I love this blog exists it's nice to see no of us are alone

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Sharky
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Hopefully within the next month or so I will doing a fundrasing Skydive 

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Gedb99
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Hi, I'm new to the site so just thought I'd say hello. My daughter Gwen was diagnosed with NF1 in November. We've had a pretty steep learning curve, having never heard of NF before then. She's had a tough…

Mahoney Fisher
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Hi everyone, I am Emilio's Mummy and this is his little face in the photo....any ideas how i can make it turn around the right way! 

MelS
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Finally !!

After a year of waiting things are finally coming togther. This has been one of my more painful neurofibromas. That large white mass is in my arm pit! It causes pain in my hand. Dr sinisi will remove in…

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Holz
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Hi I have NF1  Does anyone have trouble with itching and if so do you use anything to stop it. Thanks

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Gill
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Hi I have nf1 which was diagnosed at the age of 5.  My daughter who is 1 also has this.  I just wanted to ask when the brown patches start to show. And also if any one can advise as I would…

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Colette
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Today i am off to london to meet the surgeon again . Finally find out how we would like to operate !!!! Wish us luck . I hate london haha

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Holz
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have the winners be comfriemend   yet in the kids comp and this one 

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Elliesaundersxx
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Hi, my 7 year old was diagnosed at the age of 2, she so far has only a few complications, she is sick randomly every few weeks, usually just the once and then will be five within hours, does any one else…

Aimee Banks
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Our photo competition is now closed.

Thank you to everyone who submitted a photo for our competition! The competition is now closed and winners will be announced on Friday 24th February.

admin
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#PhotoComp

Yes I was at Home when this happened , I left him for less than 2 minutes with a chocolate mousse

Michelle Shapiro
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Hi I'm Pam from Maldon nearly 52, I was diagnosed in my early 20s with NF1. dont get much help with NF had to pay to get lumps removed from face

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Pamb
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Hi everyone just wondered if anyone on here with NF1 suffers with hyperpronation?  

Diane
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#photocomp

#17 years old #family dog 

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Elliesaundersxx
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Photo Comp

Coniston is my home. So lucky to live here. Xx

Sharon Birkett
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Polly gum drops

Polly my brave girl  been on chemo for 2 years X love her the world 

Emily Louise Rosalina
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#Photocomp

This photo in our home town catches our Lilly's gorgeous, infectious smile xx

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SarahB7585
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Hello new friends!

Hi everyone! My name's Sarah, I have three daughters and my eldest daughter Lilly has nf1. She is now 7, thriving well which is wonderful but I feel my husband and I are constantly researching and…

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SarahB7585
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#PhotoComp

This image represents 'HOME' to me. Not my home perhaps but the home of a wonderful man Gerald Johnson, my mothers cousin. He had NF1 aswell as NF2. Sadly he passed away in 2009 at the age of 63.…

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TEEN
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I have come across this on youtube.! So how was this arranged ?!

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Holz
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Iam Noreen steenson From Belfast Northern Ireland iam 42 years old I was diagnosed at 17 have had many surgeries but there not much support in Northern Ireland

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Noreennf174
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#photocomp

As I'm from London its home for me 

Lee Sayers
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Hi  michelle from London here .  My son and I  got the conformation today that we both have NF1.  It took them 18 years  and 4 lots of genetic testing to diagnose Daniel .

Michelle Shapiro
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Hi everyone my name is Stephanie (Steph) and I live in Newport it so nice to finally be able to talk to other people with nf1 as I have never had that opportunity I have the mild form of nf1 but…

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Steph
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#photocomp

This to me is home. Where i live. The seaside. I would never move away and have lived here all my life

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Holz
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Hey there , my names lee I have NF2 , had to many ops to list !!! But it been a long 8 or so years !!! But I have got this far so you have to be positive in every and try not bottle things up  !…

Lee Sayers
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