Vasculitis Awareness Month 2018: Making the Invisible Visible
May is Vasculitis Awareness Month and we would like to help spread awareness about the patient experience.
Ever wish others understood what it is like living with a chronic and invisible disease like vasculitis?
To shed light on this issue, the Vasculitis Foundation and the Vasculitis Patient-Powered Research Network created a 24-hour twitter event where members of the vasculitis and chronic disease community share aspects of their life that the average person might not know. We hope to shed light on a wide range of experiences including: quality of life changes, hiding pain, the societal expectation to have kids, and fear of disease progression.
Here are just a few examples for inspiration:
“I don’t know what it feels like to have no pain. #KnowVasculitis”
“I’ve learned to never compare my #vasculitis w/ others. Everyone is different, vasculitis can be mild/moderate/severe, everyone responds to treatments differently- it is not a one size fits all disease. One similarity is we are all courageous warriors! #Knowvasculitis #Invisiblemadevisible”