Patient stories

My story starts towards the end of 2019, when an unsuspecting MRI scan of my head, reported a cerebella Hemangioblastoma. I was referred to Queens to meet with a specialist Neurosurgeon; where further scans confirmed faster…

One brain tumour, two spine tumours, one inner ear tumour, one pancreatic tumour and several eye tumours. It’s not a rundown anyone would want to list, but it’s the reality for Georgia who is living with…

21 years ago I found out that I had VHL at the age of 7. Luckily for me I never had any symptoms to be diagnosed with VHL. However, my mum on the other hand was…

Why I’m running the London Marathon 2015 I guess I’ll start by telling you a bit about myself and my connection to VHL. My name is Ian, I’m a 25 year old accountant from Manchester and…

I was diagnosed with Von hippel Lindau disease at the age of five years old it is a very hard genetic condition in the way it affects my life I have to attend lots of hospital…

“Diagnosis as a Blessing” Janko Andrijasevic, Montenegro/Croatia It must have been as early as 1987 that I started developing the first symptoms of VHL – hearing loss, tinnitus, and balance problems. Then ensued kidney complications and…

I am a 41 year old wife and Mum with VHL. Last year was the worst year of my life thanks to my VHL. In June ’22, I had one of the most grueling general surgeries…

My first symptoms were numbness and pins and needles in my right hand which got missed diagnosed as for carpal tunnel. I went for an emergency MRI and it turned out to be a tumour on…

I noticed sudden vision changes around the age of 14 and was diagnosed with VHL when I was 15.  It took 12 months, and many doctors, for me to get a diagnosis.  My family were all…