Courtney wants us to Shine A Light on nerve tumour campaign

Courtney Lee Deakin, 26, from St Bees, was diagnosed with neurofibromatosis - the umbrella term for a group of genetic conditions which mean nerve tumour increase, at the age of three.

Her mum, Kay Lee, had recognised some tell tale cafe au lait marks on her body after watching a TV programme on it.

At the time the marks were the only diagnosis indicator.

Courtney said: “She rang the doctors the next day, as she remembered that when I’d been in hospital around the age of two years, having suffered a febrile convulsion, that a doctor had commented on the marks.

“The doctor asked to see me and I was diagnosed from then on, from which continued 15 years of annual check-ups.”

One of the consequences of living with neurofibromatosis is coping with the daily itchiness of having more histamine in her skin than usual.

Courtney said: “One of the more recent effects, that started last year, was my whole body crawling with itchiness.

“Having it on a daily basis can be unbearable, especially when I am at work. This is to do with people with NF having more histamine in our skin.”

She explained that the neurofibromas that grow in her skin are often itchy, because the mast cells present in the neurofibromas release histamine and can hurt when touched, growing or as a result of an injury.

Courtney said she uses an anti-histamine to help to numb it for a few hours but said that it doesn’t really ever take away the pain.

The neurofibroma is a benign nerve-sheath tumour in the peripheral nervous system.

Courtney said: “I have two lumps currently growing on my neck.

“One is visible and the other not.

“Usually in the past I have had lumps grow on my armpit or back but then they have disappeared over time.

“Whereas the lumps on my neck have been visibly getting bigger as I have got older.

She added: “NF changes over time so can be quite a daunting sort of living with the unknown, it will affect me more as I grow older, or when I want to start a family.”

Courtney said her symptoms are mild compared to others that she has met that have been diagnosed with NF in the UK, and with people having differing symptoms, why it is even more important to raise awareness.

She said: “That’s why I think it’s important to raise awareness of this condition, because no one with NF has exactly the same symptoms and just because they are invisible to others does not mean they are not there.”

She added that there is no known cure for neurofibromatosis at the moment, but: “with all the great work and research that Nerve Tumours UK and the Children’s Tumour Association are doing I hope that will change one day.”

Courtney ran in The Great North Run last year to fundraise for Nerve Tumours UK, raising more than £600 for the charity.

She said: “They are a charity that has no government funding; they rely entirely on fundraising events.

“They were originally called The NF Foundation, they helped me a lot, especially when I was a teenager at school because the freckling is so obvious I struggled with body confidence issues.

“I don’t feel that now, it’s kind of just there, it just sort of looks like really bad patchy fake tan.”

Having a supportive group of friends and family and volunteering with the Nerve Tumours UK charity has helped Courtney to cope with the condition.

She said: “I think having a really supportive group of friends and family has helped me get to the confidence I have now.

“Volunteering and being more involved with Nerve Tumours UK sort of gives back the help they once gave to me.”

She has to regularly go for check-ups. These include eye check-ups to make sure that no tumours are growing on her eyes and checks on her back to ensure that there is no curvature of the spine.

Courtney said that running with a local club has helped.

She said: “I have found that running with St Bees Triers Running Club has really improved my posture, although I do get more tired than most people and my muscles/back gets sore if I move around for long periods of time.”

She said that although it has been more challenging in the past year, dealing with the itchiness, she is not dwelling on the condition or allowing it to control her everyday.

She has found Nerve Tumours UK to be a great source of support in providing a helpline for people and families affected.

Courtney runs an Instagram blog encouraging people to overcome life’s obstacles, with the motivation that people should always believe in themselves.

She said: “I run an online community on Instagram with a blog called Girls Can Climb Mountains to encourage people to overcome life’s mountains and believe you can!

“I share being active in the Lakes, mental health and write my story up to date alongside my team member Emma based in the Alps.

“My go-to motivation everyday is ‘always believe you can!’"

Courtney and Nerve Tumours UK are supporting the Shine A Light campaign for World Neurofibromatosis Awareness Day on May 17 and encouraging buildings and landmarks around the world to be lit up in blue.

Last year 326 buildings were lit up in support of World NF Awareness Day, including Blackpool Tower, Tyne Bridge, Media City and National Theatre in London.

Simon Vukelj, chief marketing officer of the Children’s Tumour Foundation said: “The campaign will be open to all, but for Neurofibromatosis patients, their friends, and their families, it is also a chance to unite their voices and declare that NF is a serious condition that deserves everyone’s attention, and that neurofibromatosis patients deserve a cure.”

For more on NF and the campaign go to: https://nervetumours.org.uk