Childhood Tumour Trust

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Children with Neurofibromatosis 1 – Tumours of the Nervous System

My Experience

I have a close relative who has Neurofibromatosis 1 – it can be a heart-breaking and challenging condition to live with, for the individual and for their family and friends.

  • The Childhood Tumour Trust (CTT) gave us hope.
  • CTT lifted us up out of the isolation.
  • CTT showed us that we weren’t alone.
  • And most importantly, by attending camps run by CTT full of children with the same condition, they showed my relative, who had been horribly bullied at school and had to endure multiple hospital appointments and procedures, that they weren’t the only one going through this.
  • I can’t describe the difference this made to our lives.

What is Neurofibromatosis 1?

Neurofibromatosis 1 is a relatively common genetic condition, and yet most  people have never heard of it. There are around 25,000 people in the UK with Neurofibromatosis 1 (around 1 in 2,500), which is more than Cystic Fibrosis and Motor Neurone Disease combined, and yet there is very little support out there for those with this condition.

What are the symptoms?

Neurofibromatosis 1 causes tumours to grow along nerves in the body and on the skin; this can be painful, debilitating and disfiguring. Other physical symptoms include bone deformities, eyesight and mobility problems and cancer. In addition, many people experience attention, communication, social, hyperactivity, learning and coordination difficulties.

If anyone has 6 café au lait marks (birth marks) more than 0.5cm, they have a 96% chance of having Neurofibromatosis 1.

How does CTT help?

CTT recognises that many children with Neurofibromatosis 1 have never met another child with the same condition. They often feel isolated and different and have low confidence and self esteem.

CTT arranges camps and days out for children with Neurofibromatosis 1 so children get to meet with others who are like them. They can, for once in their lives, feel ‘part of’ and ‘the same as’. They make friends, sometimes for the first time, who they can talk to about their condition and the challenges it presents; they compare tumours and pain and hospital appointments; and they cheer each other on as they find the confidence to take part in activities that they would previously have watched from the side lines.

These camps lift children out of depression, difference and loneliness into hope and friendship and normality.

In addition, CTT provides advisors around the country and contributes towards essential research.

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