We've been in contact with some VHL patients who are planning to immigrate to Canada, so I started to look into the issue and found this:
Officials have option to bar sick and disabled people from residency: “’Cold-hearted’ but fair”
CBC Radio interview with Immigration Consultant (8:28)
Webpage article: Family whose son has Down syndrome can appeal immigration 'inadmissibility'...
I try not too think about it…
I'm trying to be active by performing a daily 7 minutes workout. Also having a dog adds at least 1 hour of activity on my daily schedule. Furthermore, I decided back in November last year to change my diet by consulting a dietitian...
My son finally had his eye removed today so been long emotional day but I have to say he is my hero…
Also, there were over 20 answers in our VHL Canada Peer Community that indicated that many people practiced some sort of self-care or stress management. For example: Social support (family, friends, others, professional); Doing my own research. Info about the actual condition; Exercise (different types and intensities); Volunteer or helping others; Stress relaxation techniques
VHL Alliance patient handbook: it's inevitable with anyone, particularly someone, directly or indirectly, impacted by a long-term medical condition such as VHL. Unfortunately, the nonstop stress of modern life (particularly when dealing with a long-term medical condition) means that the alarm system rarely shuts off..
Chronic stress not only has detrimental effects on our physical health, but also has a large impact on mental health... (Centre for Studies in Human Stress, Canada)
Professional and self-help ways to calm emotional roller-coaster (behavioural health psychiatrist, US)
Dealing with psychological stress (National Cancer Institute, US)
Je ne suis pas bilingue, mais il y a des gens de notre groupe du Québec...
C'est un très bon endroit pour obtenir du soutien et de l'information: https://www.facebook.com/groups/canadianvhlwarriors/
Voici un autre endroit pour l'information :
https://rqmo.org/centre-dinformation-et-de-ressources-en-maladies-rares/ (RQMO – Regroupement québécois des maladies orphelines)
Sometimes I feel overwhelmed, intimidated, or scared... Doing my own research on disease-specific VHL info, as a patient, has helped me to become aware of some comprehensive resources:
GARD Interactive VHL Information Tool
Genetic and Rare Diseases Information Center (GARD) is a program of the [US] National Center for Advancing Translational Sciences (NCATS) to provide access to current, reliable, and easy to understand information about rare or genetic diseases
Sometimes I feel overwhelmed, intimidated, or scared by things I hear especially from online support sites. Doing my own research on disease-specific VHL info, as a patient, has helped me to become aware of comprehensive resources. This is one example:
Genetic and Rare Diseases Information Center (GARD) is a program of the National Center for Advancing Translational Sciences (NCATS) to provide access to current, reliable, and easy to understand information about rare or genetic diseases