Karen Tillman recently brought the following MySpace page to my attention and I thought I'd share it with the Hermansky-Pudlak Syndrome community. As most of you know many people with HPS develop digestive problems that are "Crohn's like." Estimates vary as to how many of us develop these issues - but somewhere between 15 to 20 percent of us.
For some of us the colitis seems to be somewhat mild - a sort of nagging irritable bowel. Some of us have more severe symptoms, but they generally respond to medications. A few of us have quite severe symptoms that don't respond well to medications.
I'm also one of the HPS'ers that has had this experience. At 19 I had an ileostomy to remove my colon and rectum. At the time I didn't know the troubles I was having were caused by HPS.
This is the MySpace page of a 25-year-old guy from Boston who also has "bowel issues." He's made a documentary film about his experiences and has quite a following on MySpace of other people with Crohn's and Uncerative Colitis. I was looking through his friends list and noted most of them are in their teens to 20s - the general age of onset for HPS-related bowel issues. I thought perhaps some of you would enjoy his page and networking with his friends. Likewise, there's very likely someone among his contacts that is having bowel issues and has no idea they could be related to their albinism. It's a great idea for us to all network with each other. You never know who you might find.
So, check it out at: http://profile.myspace.com/trueguts
For some of us the colitis seems to be somewhat mild - a sort of nagging irritable bowel. Some of us have more severe symptoms, but they generally respond to medications. A few of us have quite severe symptoms that don't respond well to medications.
I'm also one of the HPS'ers that has had this experience. At 19 I had an ileostomy to remove my colon and rectum. At the time I didn't know the troubles I was having were caused by HPS.
This is the MySpace page of a 25-year-old guy from Boston who also has "bowel issues." He's made a documentary film about his experiences and has quite a following on MySpace of other people with Crohn's and Uncerative Colitis. I was looking through his friends list and noted most of them are in their teens to 20s - the general age of onset for HPS-related bowel issues. I thought perhaps some of you would enjoy his page and networking with his friends. Likewise, there's very likely someone among his contacts that is having bowel issues and has no idea they could be related to their albinism. It's a great idea for us to all network with each other. You never know who you might find.
So, check it out at: http://profile.myspace.com/trueguts
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