Patient stories

VHL UK/Ireland is excited to share ‘A Poem For Our Warriors’. The video consists of real VHL warriors and family members, all affected by the rare genetic condition. Featuring over 20 participants, who have experienced over…

“The bad times that I’ve gone through have only made me appreciate life more”by Barry Moloney, VHL patient For me, being told I had VHL was a very insignificant thing. I remember brushing it off that…

At the age of 5, I was diagnosed with Von Hippel-Lindau (VHL) after being tested for the disease as a result of my father, and many other members of my family, also having VHL. More recently,…

For over a year, I endured relentless shooting pains in my head. Despite numerous visits to my GP, referrals for physiotherapy, and trials of various medications, nothing provided relief. After nearly 18 to 20 months of…

VHL has been a long journey so far for all of us. My mum is the first in our family to have it then Jack, me and Arran got tested and it came back we have…

What it is like to be the parent of a VHL sufferer. We are the parents of VHL warrior Kayleigh Stephens. When Kayleigh asked me if I wanted to share our side of living with VHL…

My name is Fiona Reid, I’m 35 and i was diagnosed with VHL when I was 5 years old.  My mother was a carrier of the gene, which myself and my sister sadly inherited.  The first…

“I appreciate everything I have and my body being healthy between clear scans”by Fran Bechelet, VHL patient My name is Francesca and I’m 25 years old. 10 years ago, I discovered I had VHL and my…

LIFE DOES NOT GET EASIER, YOU JUST GET STRONGER MY VHL story by Francesca Goddard, 35 Where do I even begin?! Since being diagnosed with VHL 20 years ago I have had 4 cerebellar haemangioblastomas (brain…