Club Meeting
Mon, Sep 30th 2019 at 7:45 pm - 9:45 pm
Michael Pomfret: Update on Child Tumour Trust.............. Duty Stewards: John Hughes and Jim Kent
Martin and his son Sam spoke to the Club in 2016 on neurofibromatosis and this talk will update us on progress in the last three years.
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
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