Two days ago I went to have blood taken. The nurse commented that it was an unusual set of tests: Vitamins D, B12, C, magnesium, potassium, iron and folic acid amongst others. She was fishing in the nicest and jolliest way, so I said I had Ehlers-Danlos. Had she heard of it? No, she hadn’t.
Nothing new there then. We come to expect it.
In the Co-op just now there were serendipitous bags of parsnips at 29p. Fabulous. Parsnip soup will soon be on the boil. In my vegetable reverie I couldn’t help overhearing a young man stacking the shelves and talking to his friend. Now it’s generally rude to eavesdrop on private conversations, but this one was about his shoulder ‘popping out’ last night. He had to put it back in again. My interest was aroused. Should I say anything? What would he think of a stranger starting a conversation about his shoulder? Ah well…..so I plunged in: I couldn’t help overhearing, and does your shoulder often pop out? Yes, it did, and yes, he could do 7 out of the 9 tests on the Beighton scale – which he’d never heard of – and showed me some of his ‘double-jointed’ party tricks. He’d never heard of EDS or even hypermobility.
I’m going back to take him details of my blog. I didn’t want to scare him (don’t know if I succeeded in that!) by asking if he had flat feet and if he could do certain contortions…..but he did and he could. No, the doctor hadn’t told him of any underlying condition. I tried to reassure – after all, he may well be hypermobile and asymptomatic. In which case it’s all hunky dory and merely a flexible friendship. Then again, it may be EDS.
Why do the medical profession rarely know anything about this, especially when it is so very easy to detect? I shouldn’t have to tell someone this way. But it sadly didn’t surprise me that his doctor knew nothing about it………
One thought on “SEEING THE INVISIBLE…..why can’t the doctors?”
GPs in the UK have rarely any idea what EDS is, let alone its implications for sufferers or those close to them. Even in the USA, where research is considerably more advanced, it is difficult to find medical personnel who have any clue about it. Claire is wholeheartedly to be congratulated on the research she has done and is now trying to make available for the silent thousands or tens of thousands who are being stupidly misdirected to ignorant psychiatrists, therapists or other panjandrums who rake in lots of money by palming off their patients with pseudo-scientific, but actually ignorant, “diagnoses”.
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