I started my new public blog a couple days ago. It, of course, is about my personal ss journey. I love our support group, the advice, the empathy, and helping others not feel all alone. But support groups are private. You can't share what is in a support group with the outside world.
Part why ss gets so little attention is no one makes a huge deal out of it like they do juvenile diabetes, cancer, lupus, etc. is for two main reasons. The first is that there is no cure and there are no real treatments for it other than treatments for other conditions, so the pharm companies don't care enough. Without them, there is less funding for research. The second is because it gets no publicity. Other than a few celebs like Venice Williams (SS patient) and ball player talking about his mother having ss, there is very little on the web about our condition and half of what is out there is incorrect or incomplete. And it is almost always downplayed as not that bad of a condition.
Well, I may not be able to change greed, but I believe in doing what I can to make It SS known and cared about. Maybe if people know the real experiences of what we go through, just maybe they will have more compassion and pass our stories on.