I met Sean Ahrens, a twentysomething patient advocate and founder of Crohnology.com at a recent conference panel on medical blogging. From his presentation and a previous Medicine X video, I knew that he works hard at bringing patients together and spreading the word about a difficult illness. So I wasn’t surprised to hear how active he was during Crohn’s & Colitis Awareness Week, which began Dec. 1.
“We’ve been spending the week honoring the faces – the patients, bloggers, filmmakers, tweeters, songwriters, and community organizers – who are spreading Crohn’s and colitis awareness,” he told me yesterday. “Raising awareness is important because we need to overcome the stigma that there is to live with these conditions.”
A special section of Crohnology has been dedicated to numerous patients’ stories, while another page was designed to honor the work of patient advocates like Ally Bain, a young patient who helped get “Ally’s Law” – which mandates that anyone with a medical emergency be allowed access to an employee restroom – enacted in 12 states; Reid Kimball, a filmmaker who is working on a documentary on people with Crohn’s; and Ken Baumann, an actor who has recently spoken out about his disease.
Their stories are worth hearing.