My journey with VHL properly started at 11, when they found a hemangioma (tumour on my optic nerve). I remember sitting in the ophthalmologists room, not really knowing what the fuss was about! By 15, I lost sight in the centre of eye, and things changed momentum.
Through the years, I’d seen my grandma, mum and sister go through kidney, brain, eye and adrenal tumours and surgeries. There’s a bond in sharing the experience with those who also have the condition, but a continual worry for them too.
In 2014, during routine scans, a pancreatic neuroendocrine tumour was found which required Whipple surgery. I was told I would need a Whipple’s procedure in the next few weeks because the PancNET was on the head of my pancreas. This was major surgery and my digestive system would change due to the removal of half of my pancreas, duodenum, bile duct, gallbladder and part of my stomach. The surgery was 8 hours and the tumour was removed at Addenbrooke’s hospital. After a couple of weeks I was discharged, with my new digestive enzyme pills that I now carry with me everywhere when I eat.
During my recovery, I wanted to put my mind to work in helping revitalise the VHL UK/Ireland charity – a decision that would change my life!
Since then, we have created a supportive community to patients and family members and had amazing fundraisers who have baked, ran and climbed to raise funds and awareness!
VHL has enabled me to always be grateful for every day of good health. The charity experience has taught me the power in coming together to support one another and has been an inspiration in seeing the strength of others around the world. I honestly couldn’t imagine life without the charity and the people I have met. To every #vhlwarrior and supporter – you are amazing!
