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.
We have produced a Body Map which is being included as standard in several authorities around the UK, but we will continue to push to get it in as a nationally standard insert.
Birth marks are not uncommon and indeed in most cases are no cause for concern, however, because of this many medical professionals do not recognise the possible significance of café au lait marks. We feel people have a right to know that their chid has a medical condition that could impact on their lives and those of their children.If you have NF1, mild or complex, you have a 50% risk of having a child with the condition. Moreover having NF1 increases the risk of certain cancers including breast cancer and breast screening needs to be done earlier than the general population.NF1 also increases the likelihood of other complications including a variety of learning and behavioural conditions including ASD and ADHD. With timely diagnosis of NF1 these can be monitored and support given at an earlier time point. Other complications of NF1 that are best diagnosed earlier include scoliosis and optic gliomas.On top of the Body Map we have produced an insert on NF1 for the Red Book once a child is diagnosed, for parents and medical professionals to ensure that the correct care at the appropriate time is given – see our Resources page on how to request one.
CTT sponsored 2 Health Visitor Students to attend the CPHVA Conference this year. “My name is Samantha and I had the opportunity to attend the CPHVA conference to support Childhood Tumour Trust and to learn more about Neurofibromatosis Type 1. Myself and another Student Health Visitor were sponsored by the Charity.As a student health visitor, and midwife prior to this I was not aware of NF1. Throughout training you are taught about conditions such as cystic fibrosis and muscular dystrophy along with other inherited conditions such as sickle cell and thalassaemia. To learn that NF1 is more common than most of these conditions and yet not talked about or taught to professionals seems ridiculous. Especially seeing as there are multiple other co-morbidities that occur alongside NF1 which can be debilitating for children and young people. I feel the body map is an excellent idea as it can be used universally and parents can record what they observe to appear, as well as professionals all on one place. This means that children are less likely to be missed as children are rarely seen naked after age 2 by professionals. I think attending the conference was an excellent learning opportunity as well as networking opportunity. From this conference I will be informing my HV colleagues of what I have learnt to spread awareness of NF”