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. 95% of children who present with 6 or more café au lait marks before the age of 5 in fact do have NF1.
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.
Our chair of the board of trustees, Vanessa, has been campaigning diligently on this issue including:
A Debate on Neurofibromatosis was held in the House of Lords in January 2015. Here is the closing speech by the then Parliamentary Under Secretary of State for Quality, Earl Howe
"...we cannot rest on our laurels; more needs to be done. I have no doubt that this debate will continue in one form or another outside this room. The debate that we have had today has undoubtedly been helpful in promoting a wider discussion on these issues..."
Since the debate she has had many meeting within the House of Lords, supported by Lord Hunt of Kings Heath, with members of NHS England and The Royal College of Paediatrics and Child Health (RCPCH). Although they are not convinced of the need to have the café au lait marks recorded, Vanessa has been offered the opportunity to include a leaflet about NF into the red book for children that have been diagnosed with NF1.
If you would like to help us support this campaign please fill in our petition