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…

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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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Hi, my name is Sammy...I am 24 and was diagnosed with NF1 at just a few months old. Other than a few members of my family I don't know anyone else who has the condition. I would love to meet and connect…

Sammy Whitworth
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I have been diganosed with NF1 all of my life. When my son was born on boxing day 2013 from there i was wondering weather or not he was going to have the same diganosis. Sure enough before his 2nd birthday…

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Holz
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Hi, my names Dee my son is Logan and he's just about to turn 6. He was diagnosed when he was   Just turning 5. We live in Birmingham. 

Deanna Colley
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Photo Comp: Home

This is home for me my younger days with my sister both growing up with NF looking after each other and surporting each other along the way with only family around us with NF our mum nan it could sometimes…

Daniel Lister
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Hi everyone I am 35 and have always known about my nf i am from London  ​i have had 17 brain ops due to tumors and Hydrocephalys, and one eye op also have other complications due to nf…

Alexandra Rayner
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My Name is Ana and I'm almost 50 and have NF1

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Storme
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Hello every one I am new to this site I have NF1 also NETS cancer called neuneuroendocrine I am 54 and going for my first check up next month so fingers crossed .

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Mr Pickwick
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Hi iam new to the site has anyone else had a problem with severe back pain iam 60 and have NF1 

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Ken
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Hi can anyone out there help me my son had nf 1 for 3 year and apart from the time he spent with the genetics unit at birmingham woman and being tested and diagnosed he's never seen anyone else i dont…

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Ballbreaker O'hara
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After falling ill at work , I was recently been diagnosed with a condition known as wild type gastro intestinal tumours, for which I needed surgery. This i understand is a rare…

Kerrie-louise Phillips
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Hello everyone 

Annette Jennings
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hi everyone

Hi everyone, my son Theo has been diagnosed with nf1 since being a few months old. He is now a happy, cheeky 5 year old with bundles of energy. He is now starting to setting into school but still have…

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alicookie
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Hello, my name is Mel. I live with my husband James and our two daughters - Grace (10) and Lily (6). Lily was diagnosed with NF1 when she was three years old. There is no previous family history…

Melanie Gamble
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I'm the Father of a 9 year old girl called Madeline, living in Scotland, who was diagnosed with NF1 around July 2012 when she was admitted to hospital with a spinal cord tumour.  Her's…

David Wynne
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Hi my name is Diane, we live in Worcestershire. My daughter Ella is 12 and was diagnosed 4 years ago with spontaneous NF1.  Like many of you we have been met with ignorance and a lack of understanding…

Diane
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