Nerve Tumours UK Information

Nerve Tumours UK is the authoritative voice of over 26,000 people in the UK who are born with one of the neurofibromatoses. The charity seeks to expand knowledge of neurofibromatosis and nerve tumours and advance the care for those with the condition. Every day in the UK, a child is born with neurofibromatosis – some inherit the condition, others are affected by a random mutation. Neurofibromatosis can affect anyone: any ethnicity, class or sex. Nerve tumours occur in three genetic disorders of the nervous system: Neurofibromatosis Type 1, Neurofibromatosis Type 2 and Schwannomatosis. Each of these conditions has its own range of complications, which can be life-limiting and impairs the quality of life. For example, Neurofibromatosis Type 1 involves the nervous system, skin, eye and bone. It predisposes people to many complications, including tumours of the brain and spine; malignant peripheral nerve sheath tumours and breast cancer. In addition to the physical impact of nerve tumours, many people experience social and economic disadvantages. It is a particularly isolating condition because it is often met with prejudice and bullying. Evidence suggests that the condition leads to severe financial hardship in the third generation. Sadly, many health care professionals in the UK have little knowledge of nerve tumours and the manifestations of the neurofibromatoses. Obviously, early diagnosis is crucial. NHS provision is patchy, support depends on location. Some years ago, the charity launched a scheme to provide regional specialist nurse advisors, but due to a lack of funding, this is not yet available throughout the UK. Michael Fry – Chair, Nerve Tumours UK says, “It is the launch of a revitalised mission to raise awareness and improve outcomes for people affected by neurofibromatosis. We represent over 26,000 people, their families and friends who deserve greater support and greater understanding.” Visit our new website www.nervetumours.org.uk