Medical, Disability, -
"Because EDS covers every area of the body, and every medical discipline, what is really needed are specialist centres or clinics where care can be co-ordinated. There is only 1 such unit in the whole of the UK and it’s in London at UCLH, so unless you live there you’re scuppered. They do have a 2 week inpatient unit, but afterwards you’re sent back to where you live with no follow-through. Many people with EDS therefore find they are just left to get on with it, or see Consultant after Consultant with no specialist knowledge of EDS. No-one joins the dots or looks at the disease as a whole which can be highly frustrating!"
This so much
This is why I'm rapidly turning into one of those "eh why bother seeing a doctor, it's not worth it" types
Not because I think I'm immortal or I'll get eaten by an evil vaccine
Just being so, so tired of 101 advice for other, more common conditions, from a string of clinicians who've never even heard of it -.-
(source: https://mastcellblog.wordpress.com/guides/edsguide/)
re: Medical, Disability, -
Also the "no-one joins the dots" thing is so true
My joints are one problem. They are not the only problem, or even the biggest problem my EDS causes.
But no-one gets told about the other symptoms, because they're not the diagnostic criteria. So unless you're seeing a specialist, of which there are none, they will never be considered.
