Stories

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 name is Rafael Arevalo, and I was diagnosed with VHL back in 2009. It is on my moms side of the family. It all started with my eyes, I …

I am writing to share my journey living with von Hippel-Lindau (VHL) syndrome since my diagnosis in 2012. While this condition has significantly impacted my life, it does not define …

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 …

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 …

So here goes:My name is Sarah (Holt), married to my childhood sweetheart of 28 years! Steve. We both share 2 incredible children, Ava our daughter and Jenson the baby of …

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 …

MY PART IN THE V.H.L STORY OF #5xVHLWARRIORFAMILY #vhlwarriorfamily As the Mama.Doo.G.G.Doo of the family, I try my very best to be, the Carer/Family/Friend/Confident/Loved one, to my 5x vhlwarriorfamily members. …

I was diagnosed with VHL, aged 25 – I’m 42 now. Through the years I’ve had numerous eye surgery’s umpteen kidney surgery’s, partial nephrectomy & 3 brain surgery’s. I’ve lost …

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 …

It all starts when my nan lost her life when my mother was at the age of 10 due to VHL, I never got the chance to meet her. I …

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 …

I’m Terry Montalvo and I have VHL. My family and I have this running through our genes. We have inherited this from my father who has passed away from this. …

As a small boy growing up in the 1960s there was never any reason given why my mother, an ex-ballet dancer, was in a wheelchair. No one, including her many …

In 2007 she travelled from our home in Scotland to Sheffield for gamma knife treatment on one tumour that could not be removed. She then went on to have spinal …

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 …

What it is like to be the parent of a VHL sufferer. A personal viewpoint by Paul Bryant – Father to VHL Warrior, Francesca Goddard. When Francesca asked me if …

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 …

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 …

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 …

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 …

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 …

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 …

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 …

“A hero is an ordinary individual who finds the strength to preserve and endure in spite of overwhelming obstacles”- Christopher Reeves In today’s world Cancer is a commonplace with debilitating effects, which …

“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 …

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 …

“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 …

My name is Tasha and I’m 26 years old. 5 years ago, I met Tj a man who would change my life. This is my experience with VHL as a …

“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. …

Our names are Phil and Rad. We have been married for nearly 2 years and been together for 7. Rad was first diagnosed with VHL in 2015 after a brain …