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
Hi everyone. I’m 38 years old and live in Ottawa. Sister and I got the gene from our father, my 7 year old son carries as well and just underwent bilateral adrenal cortical sparing procedure to remove two extremely aggressive pheos ...