Neurofibromatosis Type 1 (NF1) is a genetic condition which is often overlooked and mostly misunderstood. With your help we can change that.
Which is why we are asking you to join us in sharing your #LockdownStory to help create awareness during Neurofibromatosis Awareness Month this May.
When your child is diagnosed with an incurable medical condition; your entire world is turned upside down! As a parent/carer you leave the hospital/doctors with your head in a whirl. Having a child who is diagnosed with any medical condition is hard to understand and deal with, but when your child has a diagnosis that Read more...
DAYS OUT FOR CHILDREN & THEIR FAMILIES
BUILDING A NATIONAL VOLUNTEER SUPPORT NETWORK
CONTINUING TO CAMPAIGN FOR BETTER CARE
CPD Module: Understanding neurofibromatosis type 1 (NF1)
Nicole like many other children with NF1 had a very lonely and isolated childhood. She had no real friends and was often left on her own. It didn’t help that she was in and out of hospital almost more than she was in school and with learning difficulties she was seen as different. It was heartbreaking, this was on top of struggling with the medical side of a large tumour causing her immense pain and mobility issues.
When Nicole was 14 she found a camp for children with NF in America, this camp was run by the Children’s Tumor Foundation.
Childhood Tumour Trust is proud to initiate and support campaigns which we feel will benefit people with neurofibromatosis type 1. We are currently campaigning for the inclusion of café au lait marks in the Child Health Record (known as the Red Book). We feel strongly that café au lait marks should be included on a body map to avoid late or even non diagnosis of NF1. The majority of children who present with 6 or more café au lait marks before the age of 5 in fact do have NF1.
If you are aged 25 and under and have Neurofibromatosis Type 1 or are closely related to someone under the age of 25 with Neurofibromatosis Type 1 we would love to welcome you to our friendly closed Facebook Support and Information Group full of parents and young people who know exactly what you are going through. For those older than this or with a different type of Neurofibromatosis we suggest you contact www.nervetumours.org.uk who will be able to help you, and if you live in Scotland www.funnylumps.org support familes with those under 18 affected by NF. Click here to join our Facebook Support and Information Group.