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What is Neurofibromatosis?


Every day a baby is born in the UK with neurofibromatosis. There are 25,000 people are in the UK affected by the condition and as yet, there is no cure. This is one of the reasons that we have decided to make The Neuro Foundation our charity of the year. 

What is Neurofibromatosis?

Neurofibromatosis (NF) is one of the world’s most common neuro-genetic conditions, and yet one of the least heard of. NF1 and NF2 are separate and different conditions, the severity will vary from one person to another. Whilst some may live a life without health problems, many of those with NF will have multiple medical, physical and psychological competitions.


NF1 is a genetic disorder of nerve tissue affecting 1 in every 2,500 people worldwide – some 25,000 in the UK. Half of those affected are in families with no previous history of NF1. It can start for the first time like this in any family, but if one parent has the condition there is a 50% chance of passing on the altered gene to your children.

Possible Complications

  • Benign skin lumps (neurofibromas)
  • Large disfiguring benign tumours (plexiform neurofibromas)
  • Tumours on the nerves of sight, can affect vision
  • Scoliosis
  • Brain and spinal tumours
  • Internal tumours (usually benign)
  • Increased risk of epilepsy
  • Malformation of the long bones which can cause problems for leg development in children. Can lead to operations / amputation
  • Learning difficulties / behavioural problems
  • Speech problems


This is much rarer and affects one in every 35,000 people worldwide, and an affected person has 50% chance of passing on the altered gene to their children.

Unless there is a family history of NF2, diagnosis is often difficult. With no outward signs, substantial hearing loss has occurred in most cases before NF2 is suspected.

Possible Complications

NF2 is always serious. The chief characteristic of NF2 is tumours on both nerves of hearing (bi-lateral vestibular schwannomas).

Complications include

  • Benign brain tumours
  • Tumours of the spine
  • Cataracts
  • Skin tumours
  • Deafness
  • Poor mobility
  • Balance problems.

Surgery is the principal treatment for the above.


By supporting The Neuro Foundation we hope that we can raise awareness and funds to help them support people affected by NF, and work torwards finding a cure.

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