BIG NEWS!!!!!! So allie is finally getting her shit together an building a website for people with EDS and chronic illness by people which EDS and chronic illness with quality information beyond “bendy and bruisey” so far I have about Eds, fun stuff that comes with Eds, other helpful websites, news on EDS (which will all be things after I launch the site), a list of the few docs I’ve seen in DC, and the PT I had in KY (soon with reviews after I get info done), products that improve quality of life, OTC medicine that might be good, bracing and taping info, and PT that can be done at home, all with reviews beyond “actually gave me antibiotics for strep” and commenting that can be done by other spoonies who did the thing, or saw the doc.
I for one am sick and tired of spending money on seeing doctors that don’t take Eds seriously, PTs who “pain is gain”, spending $$$ on braces that one person likes but not for the reason I need it. My ultimate goal for this site will be to have a full community of people reviewing products/doctors/PTs/tapping methods so that people can see why people like XYZ and if that’s an issue that you have and if you feel that it actually will (bought wrist braces by recommendation of a doctor, I hate them because they don’t let me move my fingers and dig into my skin, so that’s 20$down the drain but LOVE the one another gave me because I can move my fingers and it doesn’t hurt my skin). Eventually and with help I would love to expand to other lesser known chronic illnesses but can only focus on Eds right now (and I know about it). If anyone would like to help with the site please PM me, especially if you want to write informative info on EDS, parts of it, and problems it causes
Of course this doesn’t replace a doctor but can help people get their shit together and learn and figure out what actually might help them personally.
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