Comment by epmaybe | Hacker News Reader

Comment by epmaybe | Hacker News Reader

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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

It has to do with the way western medicine is organized. It’s optimized for treating diagnosable illnesses, and does that very well.

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.

To be fair, there is an entire branch of (MD equivalent) accredited US medicine called Osteopathic medicine that claims to use a multisystems holistic approach to treat patients.

I agree. See also this quote:

> Confining her to a secure unit and forcing her to eat had been pointless.

This is absolutely not true. If they did not do this and the desease or another workaround was not discovered, she would likely have died.

There is always the possibility that we just won't know the cause of some medical symptoms no matter how much we test and investigate.

My question is, how often will we "just not know"?

So the doctors do some common tests and still don't know what's going on. From there, what are the odds that further tests will reach a helpful diagnosis, and what are the odds we will just never find anything helpful no matter how much we test and check?

While it wouldn't have directly lead to a diagnosis listening to her would have helped a lot. Note that they found the solution before they found the diagnosis.

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