Online Editions

7th Jul, 2022

Young Warwickshire man speaks out about nerve condition on World Neurofibromatosis Awareness Day

TODAY is World Neurofibromatosis Awareness Day and a young Leamington man has spoken about how the nerve condition affects his day-to-day life.

Patrick Smith, from Lillington, suffers from a type of Neurofibromatosis (NF2) – meaning benign tumours grow along the nerves on his spine and in his ears, causing weakness, and difficulties with hearing and balance.

The 20-year-old, who is studying for a Business and Management degree, told the Observer: “An average day is very draining living with NF2, I am almost always in pain throughout the day so completing the small ‘easy’ tasks feel like the hardest thing in the world – showering, getting dressed and making food can sometimes feel impossible to do.”

In spite of his physical challenges, earlier this year Patrick walked 14 miles through Southam and areas in Warwick District – two miles a day for a week – to raise money for Nerve Tumours UK. And despite his initial £250 target, he has raised nearly £10,000 to date.

The student also wanted to make people aware that, like in lockdown, being confined to home is the norm for those like himself, suffering from mobility problems.

He added: “There is always a million things going through my head whenever I am asked or think about going out. I can’t go out for too long otherwise I will suffer the next few days. Some places I want to go I know I can’t or it will be so challenging to do, and there are also so many activities in general I can see others do and wish I could do but can’t and that often puts me off going out and seeing mates.”

Nerve Tumours UK’s ‘Shine a Light Campaign’ has also seen iconic buildings and landmarks around the world light up in blue, to show solidarity with those affected by the illness.

Patrick added: “It’s important to raise awareness for NF because its such a rare disease that, unless you have it, you have no understanding or knowledge of how it can affect people ,or ways in which you can help those who do have NF.

“Just because its a rare disease doesn’t mean that people should turn a blind eye to it, because it still affects people who should feel like those around them understand what the difficulties are. It is also important to raise awareness for the effect NF has on other members of the family because they have to make changes in their life.”

Patrick, who is set to receive surgery this week, hopes to organise a bigger fund-raiser next year with more people involved.

Click here to donate to Patrick’s cause.

People affected by Neurofibromatosis Type 1, Type 2 or Schwannomatosis or those who know someone with the condition can call 02084391234 or visit www.nervetumours.org.uk to contact charity Nerve Tumours UK.

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