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16th May 2017

NF: the rare but devastating genetic disease that has no cure

Anna O'Rourke

Have you heard of Neurofibromatosis?

A new nationwide campaign is aiming to raise awareness of the condition.

Neurofibromatosis (NF) causes tumours to grow in various types of nerves around the body and can affect the development of tissues such as bones and skin.

The condition is genetic – half of NF sufferers inherit it from a parent, while the other half get it as a result of a spontaneous gene mutation.

It has two main strands; NF1 and NF2. NF1 affects one in 2,500 people and can show itself through 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.

Meanwhile, one in 35,000 people in Ireland are born with NF2, the more severe strain of the condition. This can lead sufferers to develop tumours in the brain and spine, which can cause varying degrees of hearing loss and mobility problems later in life.

There’s currently no cure for NF, making it a lifelong condition.

World NF Day takes place tomorrow, 17 May, and will mark the start of NF Ireland’s ‘NF Fighters’ campaign.

The organisation has teamed up with MMA coach John Kavanagh, Conor McGregor’s trainer, to raise awareness of the disease.

John and NF Ireland want people to nominate their ‘NF Fighters’, those who fight against and live with the condition every day, for titles including ‘NF Fighter of the Year’, ‘Medical Professional of the Year’, ‘Family Member of the Year’, and ’ Fundraiser of the Year’.

If you’d like to honour someone who’s involved in the NF fight in Ireland, you can do so here.