b'Frequently asked questions1. IS NF1 LIFE LIMITING?NF1 is not life limiting for most children but some of its rare complications can cause seriouspossibly life-threateninghealth problems, which is why we emphasise the importance of getting every symptom checked.2. WHAT ARE THE SERIOUS SIGNS I SHOULD LOOK FOR? The key symptoms to watch out for are unusual posture, vision changes, frequent persistent headaches, an increase in pain, or unusual lumps. 3. WILL MY CHILD DEVELOP TUMOURS?Tumours occur in most children with NF1, but they are usually harmless. Around 1 in 3 children with NF1 develop plexiform tumours that may cause more complications.4. WILL THEY BE IN PAIN?NF1 can cause pain if tumours grow in sensitive areas of the body and some manifestations can be uncomfortable. If your child is in pain, ask your paediatrician to refer you to a pain specialist who can provide the help you need. 5. WHAT DO I TELL MY CHILD ABOUT THE DIAGNOSIS?Its important to be honest with your child right from the start. Use our Patches Diagnosis book to start the conversation and then take them out for a fun activity so they dont get worried that something is wrong. Make sure they know that there are lots of other children with NF1.6. WHO CAN I TALK TO?The first step is to go to the Childhood Tumour Trust website and join our Facebook groupwell try to answer any questions you have. Other charities like Nerve Tumours UK also offer a helpline you can call during the day.CHTT2204 CTT Booklet A5_v5.indd 15 20/09/2022 16:19'