That’s an easy one to answer, but a tough one to precipitate.
Awareness. Knowledge. Informed decision-making from informed discussion with our medical practitioners.
..how to increase awareness of our complex condition, (including family/friends/employers and, crucially, medical practitioners).
Time is of the essence with any new development involving CRPS and Dysautonomia. But time slips by as we work to source information and share it with our doctors.
If I could do anything as a Health Activist it would be to provide a source of gathered knowledge and research data to back it up, that’s why I created and continue to update my What is CRPS? and What is Dysautonomia? pages (and there’s even research back-up on my Health Benefits of Tai Chi page). 🙂
Some of the data which we want to share does not exist yet. The demographics we talk about a lot amongst ourselves (late diagnoses, lack of support from our doctors and so on) is not backed up with studies, so it is dismissed as anecdotal. We need scientific evidence to back it up.
So… gathered knowledge – I’ve started that here on this weblog, I’ve got more info and research references to the ‘What is..’ page as soon as I can. Plus there are several of us CRPS patients discussing a potential website. So I’m always working on this aspect.
And…. fill in the holes regarding some of the demographic data – I’ve just completed a post-grad’ piece of research which covers some aspects of this, (an online paper still to write when my brain hangs around long enough at a time to do so), and wouldn’t it be rather cool if I could do more? Any universities want a part-time (preferably mostly distance flexitime) disabled health psychology PhD student that they’re willing to fund? (Thank-you Open University for the chance to apply for a couple of available funded slots, but I don’t know that my health could take a house-move to Milton Keynes just at the moment so I’m having to look for more local options and then weigh things up, x)
As you know, I tend to set my heights crazily high and then just see how far I can get. Who knows what the future may hold? Maybe not masked crusading, but being helpful would be good!