What is NF-1?^1,2

Neurofibromatosis type 1 (NF-1) is a rare genetic disease that some children are born with.¹ This condition affects the nervous system and causes tumours to grow along your nerves, which can lead to a series of symptoms.² That might sometimes make you sad or lonely, but remember that hundreds of thousands of babies are born every day around the world! NF-1 occurs in around 1 in 2000–3000 children, and there are more than 2 million people with NF-1 in the world today.^1,3 You aren’t alone!

1 in 3,000
children are born with NF-1¹

This is because of a thing called DNA. DNA is like a set of instructions that tells your body how to grow. You get half of these instructions from one parent, and half from the other.

Everyone’s DNA is unique, and that’s why no two people are exactly the same. Your DNA gives instructions that cause changes in your body that not everyone else has.³ It may sound a bit lonely, but remember that hundreds of thousands of babies are born every day around the world! There are more than 2 million people with NF-1 in the world today.¹ You aren’t alone!

Growing up with NF-1^2,4&5

Children with NF-1 are often presented with benign tumours that grow on the skin, which often first appear in the teenage years due to hormonal changes.⁴ The tumours vary in size, and they can grow anywhere on the body.⁴ As children with NF-1 grow older and go through puberty and adolescence, they may develop new manifestations of their condition. Children with NF-1 may go through puberty later than others, or they might start sooner (before the age of 7–9; also known as precocious puberty).⁵ Besides, children with NF1 also tend to be shorter in height than their peers.⁵ The social and behavioural features of children with NF1 also compromise their quality of life, and clinical depression might also impact their ability to function effectively.⁵ Noticing these differences can cause distress for children with NF-1, particularly if they have other visible manifestations. These include a sudden change in their emotion, and you may find your growing child no longer opens up to you the way they used to.

If you are nervous,
there are a few things you can do to keep busy:

Bring a book or your favourite toy
with you

Play some mini games to calm your nerves.
Try to count how many things you
can see that have blue or pink colour
Or how many chairs are there in the waiting room. Try to make new friends
and talk to them

There may be other children
there too, so it could be a place
where you can make new
friends.

Talking is good!

Whenever you have a question, it is ok to ask – in fact, asking questions will help you feel a whole lot better! If you’re not sure who to talk to, think about the adults you trust:

Parents and carers

Teachers

Doctors and nurses

If you want to talk to other children with NF-1, your doctor might be able to help you get in touch with people just like you!

References:

Peduto C, Zanobio M, Nigro V, et al. Cancers. 2023;15,1217.
NHS. Overview Neurofibromatosis type 1. Available at: https://www.nhs.uk/conditions/neurofibromatosis-type-1/. Accessed on 1 August 2024.
Tamura R. Int J Mol Sci. 2021;22(11):5850.
Barke J, Coad J, Harcourt D. J Community Genet. 2016;7:33–39
National Institute of Health. Neurofibromatosis 1. Available at: https://www.ncbi.nlm.nih.gov/books/NBK1109/. Accessed on 1 August 2024.
6. The Royal Children’s Hospital Melbourne. Neurofibromatosis 1. Available at: https://www.rch.org.au/kidsinfo/fact_sheets/Neurofibromatosis/. Accessed on 1 August 2024.

What is NF-1?1,2

1 in 3,000 children are born with NF-11

Growing up with NF-12,4&5