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Council Shines a Light on NF

18 May 2017

The Burnavon Theatre, Cookstown has turned blue this past Wednesday 17th May, joining other landmarks to mark World Neurofibromatosis (NF) Day.

Mid Ulster District Council has worked with the NF Association of Ireland to support the ‘Shine a Light on NF’ Campaign with the Burnavon, Cookstown being lit up blue to raise awareness and support those who live with NF.

The Association was founded in 1985 to help those affected by NF.  It is run by a team of volunteers, parents and family friends, many of whom are new to the charity sector and are involved to support their loved ones.

The main focus of the organisation is to generate greater awareness of the condition in Ireland, especially within the medical profession. The organisation was also formed to provide support for families affected, as well as to raise awareness among the public of the importance of screening and how funds are greatly needed.

NF is a genetic condition that causes tumours to grow in various types of nerves anywhere in or on the body, and which can affect the development of tissues such as bones and skin. In about half of cases, the condition is passed from a parent, however the other half of cases are a chance event called a spontaneous gene mutation, where the gene responsible for causing NF has a misprint in the genetic code. As there is no known cure or prevention at present, NF is a lifelong condition.

There are two main types of NF, NF1 which affects approximately one in 2,500 people on the island of Ireland. This is the most common variant and early stages include flat brown birthmarks on the skin, freckles in unusual places and lumps or bumps on the skin. Some children with NF1 will have learning difficulties and a third will have one or more medical complications, related to NF during their lives. NF2 is much rarer and affects one in 35,000 of the population in Ireland. People with NF2 develop tumours typically in the brain and spine, which can cause varying degrees of hearing loss and mobility problems. These might occur later in life and to varying degrees.

For further information about the condition and the support work of the NF Association of Ireland please visit www.nfaireland.ie.


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