b'Will my child grow tumours? We understand that the word tumours can be scary, but not all tumours are harmful. There are a number of different tumours associated with NF1,of which your child may have some or none. Subcutaneous and cutaneous neurofibromas are small bumps that appear on or under the skin, and usually appear at puberty, but can be seen in younger children. These appear in almost everyone with NF1 at some point, but can be relatively few in number. 4Plexiform neurofibromas are larger, more extensive tumours that grow from nerves anywhere in the body. They can be more symptomatic and develop in around 30-50% of those with NF1. Early signs may be an unexplained lump, or a very large caf-au-lait mark that becomes thickened and may have excessive hair growth. 4It is important that these are monitored by an NF1 specialist, and an appointment is made if there is any rapid increase in growth or pain. If they become symptomatic, surgery is often the first option. 4Optic pathway gliomas (OPGs) (sometimes described simply as brain tumours) are lumps that grow on the optic nerves. They can cause problems with vision, so it is essential to have regular check-ups with an ophthalmologist, and they usually appear up to the age of 7. These are slow growing tumours and there is often no treatment needed other than regular monitoring. If any issues arise, prognosis is normally good with the appropriate treatment. 4How is NF1 diagnosed? It is likely that you are reading this booklet as your childs diagnosis has been confirmed, and it would have been explained how your childs diagnosis was reached, but you may find the Diagnostic Criteria to the right helpful.What should I tell my childabout their diagnosis? Be honest with your child from the start and be open about the condition with them and those around them. Childhood Tumour Trust have a booklet for children, using their mascotPatches, to help explain their diagnosis and a video for other people such as family and friends. CHTT2204 CTT Booklet A5_v5.indd 7 20/09/2022 16:19'