When Meri's Mom and I started this site, it was due to not being able to find much in the way of HSP support anywhere on the Internet. There are support groups for everything from cancer to alcoholism to struggling with grief...but very little that we could find for HSP patients and their families. Undoubtedly, that's due to the fact that most HSP patients aren't from the far end of the bell curve where the really difficult stories come from. Most children who contract HSP are able to handle it pretty well. But, as we all know, some people's bodies - for whatever reason - just aren't as able to fight it off. And, for that small minority, HSP can indeed be, as one poster memorably put it in the title of a post, "a long road." I would only add: a long, difficult road. Chances are, if you've found your way to this site, that means you're one of the few who fall into that small minority (or the parent of someone who does).
This site is for you. For us. To help each other out, because often, even the doctors may not have had much real-world experience with advanced or unusual HSP, beyond what they may remember from way back in medical school. This site exists for us to share stories, support and community, as we each battle our (or our kids') individual courses of HSP.
However, Meri's Mom and I were startled to hear via email from one of our posters a while back that she didn't even know about the rest of this site! This bulletin board uses phpbb, which is a pre-fab bulletin-board software that anyone can download and install, if they know how to do so. Since neither Meri's Mom nor myself are computer programmers, this provided us a way to allow the community here to talk with each other. And I'm glad we've been able to do so. But what the software DOESN'T do is let me put links in the header which link back to the main page of the HSP support site. There's a link back to the main FORUM page, but not to the main page of the site. So we were startled to realize that as a result, at least one member out there had never even visited the main site itself, because she wasn't aware it existed.
This announcement is for anyone else here who may also never have known; if you found your way to this forum through the use of google or another search engine - or possibly through word-of-mouth - but you've never known about the rest of the site, then I invite you to come have a look! There's much more information, including links, at the main site, as well as some downloadable resources for parents and patients struggling with HSP. We sort of assumed that search engines would return the main page of the site before they'd return a forum sub-page, but we now know that at least one member wasn't even aware of the majority of the site. So, our apologies if you, too, have never even known it existed. Now you do.
