WHAT IS
NEUROFIBROMATOSIS ?
Neurofibromatosis type 1 (Nf1) is a genetic disorder affecting
about 1 in 2,500 worldwide - more than 23,000 in the UK. While
those with the condition have a 50:50 chance of passing on the
disorder to any or all of their children, 50% of all cases occur
in families through a spontaneous mutation of the affected gene.
Complications include: learning difficulties, behavioural
problems, high blood pressure, curvature of the spine,
malformation of the long bones, tumours on the nerves of sight,
internal, spinal and brain tumours - usually benign; speech
problems and an increased risk of epilepsy.
Neurofibromatosis type 2 (Nf2) is
much rarer affecting 1 in 35,000 worldwide. Complications
include tumours on both acoustic nerves - which usually leads to
hearing loss in late teens or early twenties - brain and spinal
tumours and cataracts. NF2 can also cause weakness and
paralysis.
Both can cause disfigurement, disability, disadvantage and
premature death. Each year more than 400 children are born with
Neurofibromatosis and it could happen in your family.
PLEASE HELP US TO HELP THEM. |
Sue’s ambition was
to be a general nurse, she was rejected during the interview as
she was told that her face would frighten patients. We work
tirelessly to put a stop to this type of discrimination in the
hope that in the future Sophia’s life will not be affected by
this type of prejudice.