Living with and loving someone with VHL can be difficult (e.g. discouragement, blame or shame). You are not alone. We want to offer everyone the opportunity to join a VHL community in Canada. Make connections or friends with others just like you. Sometimes you will experience something your existing support network isn’t familiar with.
- a family member who may or may not have the disease
- a caregiver, like a parent, of children (who may or may not have the disease)
- a someone with a long family history of VHL
- someone who wasn't aware of a specific group for Canadians or of others like you in your province or town
- someone who lives in a rural or an urban area, but may have to travel to a hospital
- a young couple thinking about family planning
- someone experiencing a recent loss
- someone looking for another method to manage stress and worries
- someone planning to move, or just moved, to Canada
...from Saskatoon, Saskatchewan: I’m a 34 year old Cancer survivor. I’ve had two deep cerebellar tumours removed, vitrectomy, 19 tumours extracted from my kidneys (2x partial nephrectomy) and lots of laser eye treatments. I don’t believe in target drugs or radiation, instead I research and test alternative treatments and medication relative to treating VHL. I am a “de novo” mutation, only one in my family to have the gift, lol. I curse VHL sometimes, but for the most part it has actually enriched my life. It forced me to look at things I’d never considered before, and made me a much stronger and more confident man. Diagnosed 6 years ago, still kicking the world’s ass!