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Courtney’s Story

12 May 2020

I was diagnosed with NF1 at the age of 3. My diagnosis came about when my Mum watched a programme on TV and she realised the marks I had on my body were too similar not to be checked. I had at least six cafe au lait marks on my body, which at the time, was the only diagnosis. She rang the doctors the next day, she remembered that when I’d been in hospital around the age of 2 years old, I suffered a febrile convulsion, ‘a seizure”. My doctor had commented on the marks on my body, from this my doctor asked to see me and I was diagnosed. Here continued 15 years of annual checkups.

I have been quite fortunate to have milder symptoms than other people I have met who are diagnosed with NF. However I have seen a significant change over the last year. One of the more recent effects that I find intolerable is my entire body crawling with itchiness. Having this on a daily basis can be unbearable, especially when I am at work. The reason this occurs is because people with NF have more histamine in the skin.

We have Neurofibromas that grow in our skin. They are often itchy. This is because neurofibromas release histamine and this is a sign of growth or when they are touched and injured. I use anti – histamine like piriton or paracetamol to help numb it for a few hours but it doesn’t really ever take away the pain.

A neurofibroma is a benign nerve-sheath tumor in the peripheral nervous system. I have two lumps currently growing on my neck. One is visible and the other not. One of the important things to remember about NF, I guess like a lot of things, is that  just because you cannot see it, doesn’t mean it's not there. In the past I have had lumps grow on my armpit or back but then disappear over time. Whereas the lumps on my neck have been visibly getting bigger as I have gotten older. NF changes over time so can be quite a daunting feeling, living with the unknown. My NF will affect me more as I grow older, especially when I want to start a family.

I think it’s important to raise awareness of this condition, because no one with NF lives with exactly the same symptoms. That’s why last year I ran The Great North Run for Nerve Tumors UK raising over £600 for charity. Representing Never Tumours UK had always been a goal of mine, but to reach well over my initial fundraising target, I can’t thank enough my family and friends for all the continued support they give to me and my NF community.

Nerve Tumours UK are a charity that has no government funding; they rely entirely on fundraising events. They were originally called The NF Foundation. When I was a teenager at school they supported me, because the freckling was so obvious on my body, I struggled for a long time with my body confidence. I don’t feel that now, about my self or my NF. It’s kind of just there, now I see it as a really bad patchy fake tan. I’m hopeless at putting that stuff on anyway haha.

Volunteering and being more involved with Nerve Tumors UK sort of gives back the help they once gave to me. The money I raise for Never Tumours UK keeps the helpline open and online for anyone who may feel in distress or needs someone who can listen.  The Foundation also provides contact information for specialist NF Nurses, as well as giving support to families. The likely age you will get diagnosed with NF is when you are a child, because the majority of visible changes can start to happen. This can be incredibly distressing for a family to be told that when their little girl is in pain, there is no cure to help her. But there is hope.

I do maintain checkups on a regular basis and keep an eye on the neurofibromas. I have every year since I was diagnosed had regular eye checkups to make sure that there are no tumours growing on my eyes. I have regular checkups to make sure I have no curvature of the spine. I have found that running with St Bees Triers Running Club has really improved my posture. I have started this month as a trial for 30 days yoga, to help improve my back strength. One of the side effects from exercise is I do get more tired than most people as my muscles and back tend to get sore especially if i move around for long periods of time.

Living with my NF can be hard, but I think it’s just being aware that one, I have it and two, it could change at any time. My advice would be not to dwell on it or allow it to control you everyday. Obviously in the last year for me its been more challenging especially with the itchiness, but that's why I am so proud to fundraise for the Nerve Tumours UK community - we are all NF Fighters Together!

I suppose many people who follow this blog will know this but my go to motivation everyday is “Always believe you can!”

Tomorrow my article will be distorted and printed in the Whitehaven News. In the article I encourage local businesses, landmarks and community of Cumbria. On the May 17th join in with the National Campaign “Shine a Light on NF”. To help support those most affected by NF. Light up your houses blue to spread awareness of people living in the UK with this condition. You will be joining a National UK Campaign with 362 landmarks such as Blackpool Tower, Tyne Bridge Newcastle, Media City Salford and the many more. Help us End NF.


By Courtney Lee Deakin

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