Neurofibromatosis is a condition that effects 1 in 3000 people, basically a child is born everyday with this. It can be hereditary or in my daughter's case just sheer bad luck. NF1&2 involves the uncontrolled growth of tumours along the nervous system, which can result in terrible disfigurement, deformity, deafness, blindness, brain tumours, cancer and death. NF is the most common neurological disorder caused by a single gene and is more common than muscular dystrophy and cystic fibrosis combined.
Sufferers can differ tremendously, family members who all carry the defective gene can all have different variations of it. Thus I think this is why it is so hard to find a definitive cure/treatment
As this condition has such little publicity funding into research is poor. As most research seems to be happening in The States, I am trying to raise awareness by starting an e petition to get the matter debated in parliament, for this to happen I need 100000 signatures. Just think at least 25000 people in the UK have this condition, it might be your neighbour, colleague or family member.
It breaks my heart to hear my 9 year old say "Who will want to marry me with this?".