OMG YOU GUYS I’M SO EXCITED.
Okay, maybe that was a little much 😉
But seriously, super excited.
Laura over at Still’s Life had a brilliant idea. And I’m not using the word brilliant just because she’s from the UK and I love the way that word sounds in that accent. It is actually a bloody brilliant idea.
In her latest post, Laura spent time documenting her Still’s rash and what kinds of symptoms present systemically when her rash appears. She had the wonderful idea to create a kind of Still’s Community project. If you’ve been keeping track of your rash, or you’re interested in doing so for a bit to help out the community, please contact her! I, for one, will be monitoring my symptoms a little more closely and trying to capture pictures of my rash in order to help with the project.
When I was first diagnosed waaaay back in 1995ish, there was literally nothing online about Still’s Disease. Even now, there are some support groups and some of them have pictures, but you have to dig for them. In fact, I’ve actually noticed a lot of my pictures show up if I search images for SD. Go figure 🙂
But I digress…
Imagine a family who has an ill child and they’re desperately trying to find the answer. They go online and they find a ton of pictures, complete with lists symptoms and pains that present with the rash. Imagine a child not having to wait over 6 months for a diagnosis, but instead being diagnosed early on enough that medications can give him or her hope of remission. Imagine what we could do for others who go through this pain – how we could help stop some of that pain for others. Imagine you taking part in that, and how awesome you’ll feel when you know you’ve helped people like that.
So pleeeeaaasssse, please, please consider hooking up with Laura or myself on this project so that we can help raise awareness and understanding!