What is Neurofibromatosis?

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)
• Disfigurements
• Social Skill Difficulties (eg Autistic Spectrum Disorder)
• Attention and Impulsivity (eg ADD/ADHD)
• Coordination Difficulties (eg Dyspraxia)
• 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.