My name is Francesca and I'm 25 years old. 10 years ago, I discovered I had VHL and my life changed. I feel after 10 years of experiencing this genetic disorder I'm ready to share my story and share awareness.
10 years ago
I was 15 years old when I was diagnosed. It took me 6 months of prove to the doctor I wasn't well I wasn't feeling well - constant headaches, sickness, dizzy spells; I was told I was endemic, I was anorexic, as I was experiencing dramatic weight loss everything you could possibly think of being diagnosed with. I was losing my confidence in myself as I couldn't understand or control my own body.
Thankfully, one day my mum refused to take the doctors advice and I was rushed to A & E for all our piece of mind; they would give me a brain scan.
They sat me in a room and said I had a brain tumour. With not knowing much I was weirdly relieved they had found something- I had been ill for so long I had forgotten what it felt like to feel well. Sadly people with VHL will feel this way when there first diagnosed whatever the outcome.
It was removed successfully by the amazing surgery I received at Addenbrookes Hospital with a couple of months physical recovery. No one would ever understand the emotional recovery for not only myself but my families recovery too.
With successful surgery, I was told that I had a rare genetic disorder VHL. My family was screened and luckily I was the only one in my family with the genetic disorder which I was so grateful for. Naturally, I did feel, when I was first diagnosed, guilt on my family and also anger; why me?. I felt anxious too but I now know that is so normal with any illness but as the years got on it has also made me much stronger.
5 years ago
I had been clear for 5 years, completed school and sixth form and decided I wanted to take my career into the beauty industry
I felt healthy and happy until my regular VHL screening at Addenbrooke's came along- my results from my CT and ultra sound had arrived.
I sat down that day to be told I had to have a Whipple's Procedure, as they have found numerous cysts in my pancreas. VHL patients may know this is a major operation. During the operation, they would remove part of my pancreas, part of my stomach and Gallbladder. I will not lie to you- when I found out the news, I took it very badly; what was in store for me would change my digestive system and body forever.
It was tough but you fight something inside of you that just fights to get yourself through it.
Post-op, I had little energy and found that patience and rest helped me, along with gentle exercise, swimming, walking the dog with friends and family and a bland diet helped too.
5 years later
I did have another brain operation and thankfully it was removed.
Like everyone I suffer from anxiety and stress daily mostly when I'm due my screening but I also feel so blessed I have these screenings for piece of mind. I wanted to share my story (which I hope is not too negative) to show that you are not alone.
My biggest blessing is having support from my family and partner and having the strength and gratitude for life in general to appreciate everything I have and my body being healthy between those clear scans.
To deal with my health anxieties (which are normal for a VHL patient), I have found working out, eating clean, spending time with loved ones and getting enough sleep helps and heals my body.
I hope my story has helped people find comfort and spread awareness of VHL disease.