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When someone has Neurofibromatosis type 1 (NF1), it means that they have cafe au lait spots (flat brown birthmarks) on their skin, freckles in unusual places and neurofibromas, or tumours, on their skin.

What is it like for siblings if their brother or sister has NF1?

Lots of siblings get on really well with their brothers and sisters who have NF1. They often don’t notice any differences. However, some children with NF1 may have behavioural difficulties similar to children with ASD. They may have meltdowns or need very rigid routines. This can affect siblings and sometimes make family life difficult.

What causes NF1?

Neurofibromatosis type 1 is a genetic condition that someone is born with. It may be passed from parents to children but half of the cases are De Novo. This means that they are the first person in the family to have the condition. It cannot be caught like a cold. In some families it will affect some children, but not others.

What does it mean?

People with NF1 sometimes have difficulties with learning, writing, sums or remembering things. Sometimes NF1 can make it hard for people to play games or catch a ball but they may be especially good at other things. Sometimes people with NF1 have other health problems. Usually people with NF1 are able to lead a normal life like anyone else, although they have to have check-ups with their doctor.

Lumps and bumps can be part of NF1. The lumps can come in different sizes and some lumps grow on nerves inside the body. Someone might be able to feel them under their skin. Nerves are like electric wires. They carry messages for feeling. Nerves tell us if something is hot or cold, sharp or smooth when we touch it.

What treatment is there?

Some people want their lumps removed. A special doctor called a plastic surgeon can remove lumps but this can leave a scar. Sometimes the lump grows back again. Some surgeons use a laser to burn the lumps off. This can also leave a scar. Big lumps or lumps deep inside the body might be very difficult to remove.


Information Approved by Nerve Tumours UK March 2024