Saturday, 17 September 2016

Manchester Support Meeting 22nd October

Please come to our latest support meeting arranged on Saturday 22nd October 2016 at St Mary's Hospital, Manchester.
 APPLY now so that we can plan catering.
10.00 - Registration – Tea & coffee
11.00 – Welcome from VHL UK/Ireland
11.30 - Dr Emma Woodward on Research (topic TBC)
12.30 – Lunch
14.00 - Q&A with Kath/Fiona
15.00 – Tea & coffee

- Connect with other patients and families
- Patients, family and friends welcome
- Lunch and refreshments provided

We are also planning on having a dinner afterwards, as an informal get together, after feedback from last years event.

Wednesday, 11 May 2016

"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 morning my mam told me. She had been worried about telling me for weeks. She had sleepless nights just thinking about breaking the news to me. To be quite honest, from what I remember I didn't care at all. I didn't care because I was only 11. I had bigger things to be worried about than VHL. Bigger things like my maths homework, and trying to do last minute piano practice before my lesson the next day. By the time I was 16 I realised how bad things were going to get. For years I didn't even think about the fact that I had a serious illness. Being told I had cancer hit me hard. I was 18. People think that being 18 makes you an adult but I was not an adult that day. I was a scared little boy.
I was sitting in Dr O'Donnell's office with my Uncle Brian. She told me the cancer was very small, that it was very early stages. She told me how good this was. In a way I was so relieved to hear that, but on the other hand, Cancer is Cancer. It doesn't matter if it's small because we all know that no matter how small it is it's going to grow and it's going to spread. On some level I knew this was coming, before the annual scans I tried my best to prepare myself for the worst. On another level I was completely shocked. No matter how hard you try to prepare for something like this, you never expect the worst to actually happen. To be completely honest, a part of me just wanted to get on a plane and leave. Just get away from it all. I've had this feeling many times since then. The day I was told the cancer had to come out. The week before the surgery. The day before the surgery. The morning of the surgery. All I wanted was to get away. Leave it all behind. Not be in pain. I of course, came to my senses and realised that this is my life now. If my Mam can go through 3 major surgeries and fight every single day of her life, I sure as hell can do it too.

I can tell you now, Cancer is not fun or romantic. Movies tend to romanticise it quite a bit when in actuality it's the most heartbreaking experience anyone could ever go through. I'm going to use the clich├ęd statement of "you never think it's going to happen to you". You really don't. You go along with your life thinking everything is going to work out until that day. It's hard to describe. It's almost as if  you faze out for a few moments and "your life flashes before your eyes", another overused but completely true statement. I thought about my family and friends. I wondered how I was going to break the news to everyone. I thought back on when I was a kid, when the hardest thing in my life was my homework.

That moment the anesthetist says "Bye Barry, see you later", you don't even have time to realise that these could be the very last words you will ever hear. I made it out like this surgery was no big deal and that I was completely fine having it to all the people I love, knowing full well to myself that this surgery could very well be the end of me. Weeks before the surgery I wrote a letter. I really would suggest everyone should write down the things they need to say to the people they love. Looking back now though it probably wasn't very good for me to be thinking about death at that stage, but that's the thing with cancer. You never know what could happen. With me, the cancer was close to the major blood vessels in the kidney. No one can say that you're going to be ok and be completely sure. It's impossible. I'm not a child anymore. I've seen enough in my life to know things don't always go to plan. Whether it's a post operative infection or a post operative bleed. There's no way of knowing what's going to happen in the future. No matter how much you pray, what's going to happen is going to happen.

I spent hours every day for a week after my surgery praying to God to stop the pain. I cried. I'm not ashamed to say it. I'm a teenage boy and I cried in front of my Aunt and Uncle, in front of nurses, and even in front of one of the most beautiful doctors I have ever seen in my life. Men need to know there's nothing wrong with crying. People don't think any less of you for doing it. So many men I know hold back tears no matter how much pain they're in. I spent hours praying, but there was nothing. I even pleaded to God to "take me away". Being in so much pain that you are literally praying for death is not a place I ever want to be in again. I have so much in my life. I have so many people in my life that I love, who love me. However, at one point that all went out the window. There's something about pain. It's a strange thing. It can make you want to throw your whole life away just for relief. At that moment I was in so much pain and I just wanted it all to end. It was a pain I've never experienced, a pain I never even imagined existed. It was what I imagine a gunshot wound or a stab wound feels like. If it is they really don't convey it very well in the movies. I screamed and shouted, all I remember is seeing nurses and doctors running towards me. Everything was hazy. I couldn't hear anything, all I could focus on was the pain. They got me into the bed and looked after me expertly. I cried. I stared into the doctor's eyes.  She held my hand. There's something about another person holding your hand that really helps you. A comforting act like that from a doctor nowadays is very rare. I realised at that moment when all these people were around me helping me that I wanted to live. I wanted to see my Mam's face again. I wanted to see my friends, the rest of my family. I wanted to put on my uniform and sit in the Marys' office with the Red Cross. I wanted to sit in a boring plant lecture where all we do is talk shit about how "we're never going to need to know this stuff". I wanted to sit with my housemates eating toasties, drinking tea and talking shit about our friends. I honestly just wanted to be at home.

That was the worst pain I had ever felt. That's what I thought, until December 4th 2015. That
was the day my incredible Mam, the woman who raised me and my two big brothers by herself while fighting this awful disease, passed away. She fought everyday for 11 years. She went through three major and extremely life-changing surgeries over the 11 years. She spent the last 4 years of her life on dialysis for 4 hours a day, 3 days a week.  She was the strongest woman I have ever known. She lost her husband to cancer and still managed to successfully raise three lads all by herself. VHL changed her life completely. That day in the hospital was like a paper cut compared to this pain. I lost a part of me the day she died.

Months before her passing Marie vowed that she would climb the Queen Maeve Trail up Knocknarea Mountain, Strandhill.  That dream of hers never came true as she became too sick. However, her family and friends will honour her memory by taking part in Strandhill’s 32nd Annual Warrior’s Run up Knocknarea Mountain on the 27th of August. All the money raised will be donated to the VHL Alliance to find a cure for this disease so other children don’t have to lose their parents so soon in their lives.

VHL has taken so much from me, my childhood, my Mam and even part of my body. My life has changed dramatically since that winter morning when I was 11 years old. The story doesn't end there. I know that eventually VHL could take my life, but it hasn't taken it yet. I still have a whole life to experience. The bad times that I've gone through have only made me appreciate life more. I'm going to fight as hard as my mother did to the very end.

VHL Awareness Month

With VHL Awareness Month now in full swing, here's a few ways you can get involved:

  • Print our poster explaining VHL disease. 
  • Use the VHL Awareness Twibbon profile phot. 
  • Share your #vhlawarenessmonth photos and selfies. 
  • Share our Facebook posts to spread the message. 
  • Wear your VHL t-shirt and pin badge with pride. 
  • Fundraise! From sponsored runs to office/school bake sales, there are plenty of ways 

Thank you for your continued support.

VHL UK/Ireland 

Sunday, 7 February 2016

"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 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.

Francesca X

3 hit TV shows that feature VHL (von Hippel Lindau disease)

VHL (von Hippel Lindau disease) is a rare genetic disorder, causing benign and malignent tumours and cysts on various parts/organs of the body through a patients life.

It's not uncommon to have to explain what VHL stands for and what it is - not many people are aware.

That's why it is refreshing to see VHL featuring on hit TV shows - it is crucial in helping to raise awareness and educate the public of this rare disease.

Here are 3 hit US TV shows that have featured VHL:

1. Grey's Anatomy - Season 7, Episode 10 - Season 8, Episode 10.

2. House - Season 4, Episode 2

3. Bones - Season 4, Episode 1

Have you seen VHL featured in TV, film or other media? Make sure to let us know within the comments section below and we will add to our list

Thursday, 28 January 2016

Making sure you get a GiveasyouLive donation

Something to be aware of for GiveasyouLive people:
The way Give as you Live works is that we claim a commission from the retailer for directing shoppers to their website and then share this with your charity as a free donation. If you have gone via their own offer email they would be able to track this and we would be unable to claim the commission for the sale.
It means you must go to the on-line website directly and not via an email link or a price comparison website.
To get the GiveasyouLive widget add-on see