My name’s Linzie and I was diagnosed with VHL at 25 years old, 15 years ago. I am a “de novo” case – I didn’t inherit VHL from either of my parents. It’s been a whirlwind since then. I’ve had numerous eye surgeries; I can’t even remember how many kidney surgeries. I’ve had a partial nephrectomy on my right kidney. I’ve had 3 brain surgeries to date and still got 10 tumours left.
As well as dealing with it as best I can, my 3 children all have VHL, (I wasn’t diagnosed until I had 2 children and the 3rdwas on the way), my oldest being blind now and my middle child had brain surgery the same week as me. It’s a scary thought dealing with VHL, and we don’t realise how strong and brave we are until we’ve no choice and have no other choice.
My name’s Jack, I live in Scotland and I have VHL. I found out when I was 5 years’ old. My mum and siblings also have it. I’ve had numerous eye surgeries and lost my sight just before my 17th birthday. I’ve had RCC on my kidneys too. I now go to the RNC for the Blind College in Hereford, I’m going to start my 3rd year and have learned so much. I’m glad to have the support of my #vhlwarriorfamily.
My name’s Cerys from Scotland. I will be 18 next week and I was diagnosed with VHL when I was 3 years old. My mum and 2 brothers also have VHL. I’ve had a lot of eye surgeries and 2 years ago I was having really badheadaches and ended up being rushed into Queen Elizabeth Hospital in Glasgow for brain surgery while my mum was getting it done too.
