Project: HS Aware

HS Aware is an advocacy group that represents people coping with a rare illness called Hidradenitis Suppurativa. HS is an auto-immune disorder that causes painful abscesses, and can be accompanied by pus and unpleasant odor.  Because of the incredible pain and embarrassment, it can lead to social isolation for people living with it. The disease is so rare, few doctors know about it and people can spend years looking for a diagnosis.

So, HS Aware does just what its name implies: raises awareness about HS. Digital stories are an excellent way to raise awareness about an issue – and HS Aware is excellent at using social media to bring people living with HS together to break isolation and learn strategies for not just coping, but thriving.

 

It’s one thing to read someone’s story, but it’s a completely different experience when you can hear someone’s voice. Suddenly they’re not just words on a screen, they’re real people, with real experiences, going through the same struggles.  Living with Hidradenitis Suppurativa (HS) is extremely isolating, and being able to see and hear someone’s digital story has been invaluable for HS Aware in helping bring people together to shed light on this disease.
-HS Aware participant

What was the most challenging part of the workshop?
Cutting my 2877 word story to 450.  But I got that done!
-HS Aware participant

My favourite moment during this awesome workshop aka boot camp was how easy going and relaxed the instructor was.  She was very informative, never made you feel like an idiot and was more than willing to help you through your issues.
-HS Aware participant