By alanc on Mar 26, 2008
I've been falling further and further behind on blogging for a while - maybe I'll catch up someday with the cache of posts I have stored in my brain half written (there's a new issue of the X11 DTrace companion, a post on the recent X server security fixes and MIT-SHM regression they introduced, several posts for the OpenSolaris elections which are too late now, and a post or two on X in Indiana bouncing around in there).
This post on the other hand, may actually be early, since Sjögren's Syndrome Awareness Month isn't until April, but I'm posting now since the 2008 Salt Lake City Sjögren's Walkabout is this coming Saturday, March 29, 2008. My mother is one of the organizers, and my sister was going to be one of the walkers until she broke her leg last month. I'm still pledging money to the Sjögren's Syndrome Foundation for both of them though.
For those who haven't heard of Sjögren's — and that included me a few years ago — the About.com article What is Sjögren's Syndrome? and the Wikipedia page on Sjögren's Syndrome can tell you far more than I can. If you're a female who has been noticing problems with dry eyes or mouth, or you know one, you probably want to read more about it, as those can be early symptoms of something far more serious. The foundation estimates 4 million Americans suffer from the disease, and that women are approximately 90% of those.
Even as widespread as that is, it still sounds like one of the random auto-immune disorders they throw out every week on an episode of House and then rule out and you never hear of again. For my wife and I though, it became a permanent part of our lives several years ago when coincidentally both my mother and my wife's mother were diagnosed with it, and they became active in trying to raise awareness of the syndrome in their communities (as you can see in those two articles).
While they've had to adjust to the dryness in many little ways, such as always carrying a water bottle and really appreciating a gift of saliva-inducing Xylitol gum, the constant tiredness is what has really affected them most. They were both busy professionals (a pediatrician and a dental hygenist), active in professional organizations and volunteering in their communities, but have had to cut back as they just didn't have the energy to keep doing it all any more.
Our bodies are mostly water, so you can imagine the problems that happen when various parts start drying up, and that's where the real dangers of the syndrome come in, as the body's immune system starts attacking other systems. While there are treatments available for the effects on some parts of the body, there is no cure, and the Sjögren's Syndrome Foundation is devoted both to research and to spreading the word so that sufferrers can be diagnosed earlier and begin treatments sooner.
So what can you do? If you want to join me in donating, you can do so at either my mom's firstgiving.com page or directly on the foundation's web page. If not, just remember what you've read here the next time you hear a woman near you complain her eyes or mouth are always so much dryer than they used to be and pass it on.