patients • family • parents, partners, children, siblings, and aunts...

Blog January 30, 2019

Happy New Year!

VHL Canada Peer Community includes patients and family members like parents, partners, children, siblings, and aunts. Online, Facebook is the main website at this time to connect the VHL Canada Peer Community in a vast country.

Common personal themes include... I'm:

• freaking out
• ‘going with the flow’
• aware that some people have it “worse” and others “a little better”
• a parent with child(ren) both with or without VHL
• travelling a lot for a specialist or hospital
• experiencing a recent diagnosis or someone else is
• experiencing a crisis, hospitalization, symptoms, complications
• worried about the size or position of tumours or cysts
• experiencing a recent loss (death, but also life changes)
• a de novo -1st in your family
• someone with a family history of VHL
• a veteran who's been through a lot - "This ain't my first rodeo!"
• supporting a family member –like a spouse or sibling with VHL
• wondering about family planning or pregnancy
• unaware of others in your province or town
• looking for disease-specific or bio-medical research information
• trying to communicate better with my healthcare team or find specialists (or even a family doctor)
• wondering about disability benefits in my province
• planning to move or new to Canada
• having my first VHL problems later in adulthood (e.g. 50-60s)

Can you add your own?

Personal and Family Stories here

There’s also a public page for updates here

Thanks,
Henry