What is VHL Disease?
Imagine being told you have up to a 80% risk of developing a brain tumour, and that although (the first time) it can be removed with surgery, it is very likely you’ll develop more – either in the same, or other parts of the brain. And you are likely to have multiple tumours in the brain at the same time, and that no-one can predict which of these will suddenly erupt and possibly become life-threatening
If that’s not enough, you also have a 90% chance of having other tumours in other organs at the same time- and again not just one, but many- in the eyes (up to 90% risk), kidneys (up to 80% risk), pancreas (up to 17% risk), adrenal glands (up to 20% risk), spine, inner ear and reproductive organs. And it is even possible that lung and liver tumours could also occur
While some patients will have only a modest number of surgeries (which is bad enough!), some are, at best ,facing a lifetime of surgeries on key organs, with not only all the risks that come not just with surgery and anaesthetic, but of MULTIPLE surgeries, which at some point means that further surgical interventions simply become too risky to perform, Add to that, some locations are too risky in and of themselves, as these tumours are highly vascular (connected to lots of blood vessels)
Permanent loss of organ function is a very real possibility, as is risk of death when tumours are too difficult to operate- the main cause of death being from brain tumours, followed by kidney tumours if they develop metastases
This is VHL. Click here to Learn more
How can I get involved with VHL Awareness Month?
Spread the message & share the love!
Share “Your Story” and the reasons why you’re raising awareness- remember you can always reach out to add your story to our site Contact Us
Spread the message & share the love on social media with these tags #vhlawarenessmonth #vhlawareness #vhlukireland #vhlwarrior
Wear your pin badge & VHL UK Ireland merchandise
Visit our eBay shop and grab your pin badge / wristband & merchandise to wear and show your support. Shop Now
With every t-shirt, vest, hoodie purchased in May, you will receive a FREE pin badge! Items in our eBay shop are available to be shipped worldwide
Send in your photo of you wearing your pin badge, wristband or merchandise to us and we will add it to our Facebook Page Contact Us
Share your photo on your own social media profiles with tags #vhlwarrior #vhlawareness #vhlawarenessmonth #vhlukireland
Fundraise & raise awareness at the same time!
Whether it’s a coffee morning, a bake sale, sponsored run, workplace “dress down day” or even a sky dive! Anything you want to do that is fun is a fantastic opportunity to raise awareness for VHL Disease and the funds at the same time
Visit our Fundraising page for everything you need for a successful fundraiser. Take me there now
You will find everything you need including fundraising forms. Brilliant to use around the workplace and on notice boards.
Donate! Collect funds and donate directly to VHL UK Ireland
EVERY PENNY of your donations will got to fund essential research into helping us reach our goal to find a cure, and to informing. educating VHL patients & carers about the disease
We have already helped to fund many research opportunities in the UK, brought together patients who suffer this disease, helped many patients and their carers to better understand VHL and how to better advocate for treatment and surveillance
We can’t do this without you! Learn how you can donate