Tuesday, May 29, 2012
HPS’ers with bowel disease meet at 2012 conference
For the first time, a special session was planned at the 2012 conference to allow those with the digestive complications of HPS to meet and get to know one another. The session was not scientific (although bowel issues were addressed during the science sessions on Sunday).
“This was a session that was suggested by one of our members,” says Heather Kirkwood, HPS Network VP and member of the conference planning committee, “He pointed out that at conference, it’s sometimes hard to tell who else experiences the bowel complications of HPS so that you can share experiences. After all, it isn’t always the sort of thing you talk about with just anyone.”
Approximately 20 HPS’ers and family members attended the session. They shared stories and experiences, as well as discussed ways to help advocate for more research into the bowel complications of HPS. It was decided that attendees with bowel disease would be asked to stand up at the same time during the science session to visually show how many of the conference attendees experience bowel problems.
“It didn’t matter what type of HPS you had. If you had bowel problems, diarrhea, acid reflux, ostomies, it didn’t matter,” says Karen Tillman, “It let doctors and the people around conference know that we have more of a membership affected by digestive issues than any of us thought.