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Recent ● Loss ● Dx ● 1st Rodeo?

10/15/2018

 
Blog Post

List taken from "Patients & Family Members" webpage: "For example, maybe you’re...
  • freaking out
  • 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 recent loss
  • de novo -1st in your family
  • someone with a family history of VHL
  • a veteran and been through a lot already - This ain't my first rodeo!
  • someone 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 current disease-related or medical information
  • wondering about disability benefits in your province
  • adopted
  • planning to move or just moved to Canada
  • having your first symptoms or diagnosis later in adulthood (e.g. 50-60s)


You may have already seen this and identify with something on this list. It doesn't cover everything - it's just what comes to mind when I think about the people from Facebook, other forums, emails, and phone calls.


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