Neurofibromatosis

Hard to say, Harder to live with.

Patrons: Lord Hunt of Kings Heath OBE, Rakie Ayola

Neurofibromatosis Type 1 (NF1) is more prevalent than Cystic Fibrosis, Duchenne Muscular Dystrophy, and Huntingtons Disease combined. Complications may include:

Tumours growing along nerves on the skin and inside the body
Bone Deformities/Scoliosis (eg Curvature of the spine)
Sight Problems/Blindness
Hypermobility/Mobility Issues
Cancer
Learning Difficulties (eg Dyslexia)
Social Skill Difficulties (eg Autistic Spectrum Disorder)
Attention and Impulsivity (eg ADD/ADHD)
Coordination Difficulties (eg Dyspraxia)
Disfigurements
95% will have 6 or more coffee coloured patches (Café au Lait marks)

Which can lead to feeling:
Bullied, Isolated, Lonely, Low Self-Esteem, Chronic Pain, Depression

25,000 people in the UK live with Neurofibromatosis Type 1. Many of these are children and young people. Their young lives revolve around hospital appointments, consultants, scans and operations. There is no cure. However with regular check-ups and appropriate care, many people affected with NF1 can lead fulfilling lives.

"I hope you all have a wonderful time at camp. I'll be thinking of you. All my best"

-Gillian Anderson
Actor

Childhood Tumour Trust is a growing charity whose aim is to provide opportunities for children and young people with NF1 by providing the opportunity to attend camps in the UK and USA, days out for children and their families, to raise awareness, to continue to campaign for better care, to fund research and build a national volunteer support network.


Registered Charity Number 1165777 | Built by Ascesis