UK folks.... Has anyone else signed up for Our Future Self? It's a massive prospective cohort study where they're recruiting 5 million adults and following them up for life to see what illnesses they develop. It'll be used as a data mine for various researchers who will be able to apply to use the database for their research. I have signed up on the basis that it would be good to have some Zebras to make all their research data go stripy! Tee, seriously, I honestly believe that it is important for Zebras of all descriptions to sign up for these things, so they don't only do their research on horses. I have no idea whether, in future, someone will want to use the cohort to study EDS or hypermobility, but if it is as underdiagnosed as I suspect it is, then it would be really useful for us to be present in the cohort so that we can be counted. I've just done the initial questionnaire and obviously there's not much there which is relevant to hypermobility specifically, but they do ask about joint pain and there are tick boxes for other things like autoimmune conditions, neurodiversity and other stuff which is associated with being a bendy Zebra. They take blood and seek DNA variations, so it is possible that, in future, someone could come along and say they would like to screen the cohort for mutations associated with, say, EDS, then use the database to do further research. Worth a shot? More info here:

Posted by Caroline G at 2023-06-08 22:03:04 UTC