Von Recklinghausen's disease

What is neurofibromatosis?

Neurofibromatosis is a genetic condition you are usually born with that causes benign tumours to grow along your nerves anywhere in your body. There are two types of neurofibromatosis, NF1 and NF2.

NF1 is the most common type which causes the nerve endings to grow benign tumours anywhere in your body. This can result in other effects which include learning difficulties, epilepsy and social problems.

NF2 on the other hand is a much less common disorder of the nerve tissue, resulting in acoustic neuromas or vestibular Schwannomas on the nerve that takes messages from the ear to the brain. This can result progressive deafness and communication problems.

There is currently no cure for neurofibromatosis but there are still treatments which include:

  • Surgery (to remove tumours and improve bone abnormalities)
  • Medication (to control secondary conditions, such blood pressure)
  • Physio-therapy
  • Psychological support
  • Pain management

(You can read more about these forms of treatment at the NHS website here)

What causes neurofibromatosis?

Neurofibromatosis is caused by a faulty gene. This is what leads to the uncontrolled growth of tumours developing in the nervous system. This is due to the faulty gene being ineffective with producing the protein that keeps the growth of nerve tissue in check.

What are the symptoms of neurofibromatosis?

In most cases the skin is affected causing symptoms such as:

  • Pale, coffee-coloured patches
  • Soft, non-cancerous tumours on or under the skin (neurofibromas)
  • Cluster of freckles in unusual places such as the armpit, groin and under the breast
  • Problems with the bones, eyes and the nervous system

(You can read more about these symptoms at the NHS website here)

Are you affected by neurofibromatosis?

If you are affected by neurofibromatosis it is understandable that you might be experiencing a significant impact on your emotional well-being and physical health from this. That’s why here at The Brain Charity we want you to know that we have readily available services that will help support you through everything.

We are the only charity in the UK to be here for every one of the more than 600 different neurological conditions in existence. Individually, many are rare, but combined, they affect 1 in 6 people.

We provide practical help on all aspects of living with neurofibromatosis, emotional support such as counselling, phone befriending and group therapy and social activities to people with neurofibromatosis from all over the UK from our centre in Liverpool.

Looking to talk to someone?

Woman smiling, making eye contact and holding the hand of another woman to comfort her

Phone us

Contact The Brain Charity now

Our friendly Information & Advice Officers are here to help. We endeavour to respond to all enquiries within 10 working days.

0151 298 2999

Looking to talk to someone?

  • Please tell us which neurological condition you are affected by and what you need support with.

Caring for someone with neurofibromatosis

We understand that being a carer, parent, family member or friend can be just as hard to watch a loved one go through the difficulties this condition can bring. Our website has several links that can support you and give you lots of information and advice. To find this you can just click below.

You can also visit Nerve Tumours UK who have lots of great information about how to deal with neurofibromatosis from both the carers perspective and person directly affected in many different situations.

We support carers, friends and family too

Are you a carer for or relative of someone with neurofibromatosis? It’s just as important for you to look after your own physical and mental wellbeing too.

The Brain Charity provides free support for carers, friends and family of people with any form of neurological condition, including neurofibromatosis, from anywhere in the UK.

We also run an additional carers advocacy service for all carers in Liverpool, regardless of which type of condition the person they care for has.

You don’t need to be a formal or registered carer

We can help you even if you don’t view yourself as a formal carer or claim Carer’s Allowance. Find out some of the ways we support carers below.

Other resources

The Brain Charity's library

The library at The Brain Charity has a whole range of resources you may find useful.

This includes copies of the the Neurofibromitosis Associations Booklet for children “Polly’s Best Friend: A booklet for girls under 10’’

The Winning Goal: a Booklet for Boys under 10

Talking with Children about Neurofibromatosis by Nerve Tumours UK

Orthaopaedic Manifestations Of Neurofibromatosis (Nf1) by Brian Levacks

Support groups

Children’s Tumour Foundation


Support groups at The Brain Charity

Are you interested in setting up a neurofibromatosis support group, or do you already run one? Email to let us know.

Alternatively, you can check out our list of related support groups here.

Other charities

Nerve Tumours UK

Tel: 020 8439 1234

Childhood Tumours Trust (charity supporting children and young people with NF1)

GOSH Children’s Charity

Tel: 020 3841 3131