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Case Study: Kieran’s Story

Kieran explains how he's not allowed his NF1 to hold him back.

“I was a very happy active boy with no known illnesses. When I was 5 years old, I became very unwell with vomiting and lethargy. My parents had noticed some freckling under my arms and groin but had no idea of the significance. In A&E, the consultant took one look at me and put me straight into a scanner. He explained to my parents that I had a large tumour sitting on the left side of my brain behind my left eye, and that I had Neurofibromatosis Type 1.

"My advice is to just stay positive, live your life as you would do."

– Kieran

“I am so lucky as the surgeon removed the entire tumour. Today I have some small neurofibromas on my stomach, arm and head but they don’t bother me. As a child, I joined urban scouts where we would play laser tag in the woods, and learn survival skills, which I did for 7-8 years. At age 11, I was able to go out and ride a motorbike under my dad's supervision. I could still do nearly anything I wanted. I've been playing rugby since I was 12 and I have also recently passed my driving test and I am out on the roads. 
“Throughout my life of having NF1 and my scar, I’ve had people stare, be rude and bully me, but I don’t let that bother me. I’m proud of my scar.”

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