I've created a carepage to keep my friends and family up todate and informed in whats going on with my health and millions of hospital appointments.
Carepages is a website that is kind of like a cross between facebook and a blog for people with health problems. You create a profile and can then create your own 'carepage website' where you write about your history of your condition and how you got to where you are today with it. Then you post updates when you want to let people know whats going on.
People who are subscribed to your carepage can then post response back, mainly its just comments of support.
Im finding it really hard now to keep friends up to date with what is going on becuase im seeing so many drs and having so many major problems going on at the same time. Plus it takes so long to explain things to people like what is POTS when im letting them know im going for a test.
You can set privacy so that only people you give permission to can read your page that way every man and his dog who is online can't read it so you can be more detailed if you wish.
Iv created mine because I follow a couple of American EDS friends through their carepages. (its predominantly an american site).
I aslo got fed up of my facebook being EDs updates all the time and wasnt keen on writing about my own personal health stuff on my blog when anyeone can read it.
This way I can be more detailed and talk about stuff that i wouldnt mention on facebook or my blog plus it means i dont have to have hour long discussion with people who switch off after 5 minutes on this weeks hosptial visit.
there are quite a few people with eds/hms, POTs, chiari and other eds related stuff on there so you can follow people's progres in more details. 2 of the girls i follow both have EDS and have very serious GI issues as a result. Its really helped me to follow their progress as my GI issues are getting more serious.
If you want to subscribe to my carepage the link is http://www.carepages.com/carepages/CarrieEDSuk
you can sign up and create your own, or just follow other people at www.carepages.com