| Read the next part of that statement in the article... On average it takes 10 to 14 years for people to be diagnosed, says Dr Alan Hakim of the Ehlers-Danlos Society, because the symptoms of hEDS are so varied and may not appear to be linked Imagine you’re a doctor and a young woman comes in cause they aren’t eating. What’s at the top of your differential? Anorexia, certainly
Cancer, potentially
Diabetes leading to gastroparesis? Unlikely, but let’s keep it on Ok so you try and treat anorexia, and it didn’t work (except, it did? The article wasn’t clear). Was it terrible that nobody took her at her word and worked this up? Absolutely. What else do you work up? You do a colonoscopy or upper endoscopy, you take samples of your intestine (which looked fine under the microscope most likely), you do some ct scans, and you do a gastric emptying study to make sure food is moving through intestines appropriately. I don’t really know where I’m going with this, other than to say you’re right that we should be better, and not cause suffering. But hindsight is 20/20 |
Complex multisystem diseases like Ehlers-Danlos syndrome express themselves differently in every patient. Different symptoms take you to different specialists, but there’s no one to look at your situation holistically, or who has the time to put it all together. There’s apparently a new approach called ‘Functional Medicine’ which tries to better this issue.
I’m reading Sarah Ramey’s ‘The Ladies Handbook for Her Mysterious Illness’. Part autobiography of her own experiences, part explanation about this whole cloud of mysterious illnesses from ME/CFS to Fibromyalgia to Ehlers-Danlos syndrome. It must sound like a terrible choice for anyone but those affected, but Ramey has great literary qualities and zero tendency to linger in self-pity and the injustice done to the patients. Really worth the read.