The issue I have w/ these videos is - what do I do if I'm stuck on the first step in perpetuity BC I simply CANNOT find professionals willing to take me seriously in my local context or even the in neighbouring countries?? Forget "care team", I can't even find ONE. It's just a non-stop cycle of medical trauma & "you're still young". I'm 32, & been sounding out for the better part of 15 years!!! Do I just #yolo it for Telehealth? Medically migrate? BC it really is looking like I'm SOL, & wasting away while I'm looking.
for real! if anyone has any advice with regards to that please let us know. i'm in ireland and there are ZERO eds specialists in the whole country. technically there are diagnosis pathways but in reality there's only a slim chance of getting seen at all, and if you live outside of dublin then tough luck. the genetics testing is all based out of the children's hospital too with waiting lists years and years long, so a lot of people die or get seriously ill before anything is properly investigated. i hate how much of the eds community is (unintentionally) centred around rich, and let's face it, privileged people's experience. for people in remote areas or in bad financial situations, there's nothing. i am seriously considering moving to the uk because of how bad irish healthcare is. and that's saying something because the uk's health service is severely struggling. but compared to here it's amazing. other there i could get mobility aids, i could get an echocardiogram, i could get medication. for now, that's not possible here.
The issue I have w/ these videos is - what do I do if I'm stuck on the first step in perpetuity BC I simply CANNOT find professionals willing to take me seriously in my local context or even the in neighbouring countries?? Forget "care team", I can't even find ONE. It's just a non-stop cycle of medical trauma & "you're still young". I'm 32, & been sounding out for the better part of 15 years!!!
Do I just #yolo it for Telehealth? Medically migrate? BC it really is looking like I'm SOL, & wasting away while I'm looking.
for real! if anyone has any advice with regards to that please let us know. i'm in ireland and there are ZERO eds specialists in the whole country. technically there are diagnosis pathways but in reality there's only a slim chance of getting seen at all, and if you live outside of dublin then tough luck. the genetics testing is all based out of the children's hospital too with waiting lists years and years long, so a lot of people die or get seriously ill before anything is properly investigated. i hate how much of the eds community is (unintentionally) centred around rich, and let's face it, privileged people's experience. for people in remote areas or in bad financial situations, there's nothing. i am seriously considering moving to the uk because of how bad irish healthcare is. and that's saying something because the uk's health service is severely struggling. but compared to here it's amazing. other there i could get mobility aids, i could get an echocardiogram, i could get medication. for now, that's not possible here.
I'm so sorry to hear what you're going through, please do contact our helpline at ehlers-danlos.com/eds-helpline/ for support.