peggyzuckerman at GMAIL.COM
Wed Nov 22 22:33:57 UTC 2017
Every patient advocacy group could provide endless stories of poor and/or
delayed diagnosis, the difficulty of finding a doctor who could understand
their symptoms and the great joy at having some path --even if very
difficult--vs being misdiagnosed. Many are told they were delusional, too
young to have the disease, too fat, too dumb, etc etc.
Most patients who are diagnosed at last are grateful beyond measure, and
would certainly be pleased to help others avoid the problems that they
had. Do let the Patient Engagement Committee know if you want some typical
stories. No doubt all those in this group are sadly aware of lengthy
misdiagnosis, and with those, the loss of opportunity for timely treatment.
On Wed, Nov 22, 2017 at 1:20 PM, Tom Benzoni <benzonit at gmail.com> wrote:
> That would be easily done, but the conversation has to be safe.
> On Wed, Nov 22, 2017 at 2:28 PM, Robert Bell <0000000296e45ec4-dmarc-
> request at list.improvediagnosis.org> wrote:
>> Dear list members,
>> I have been interested in the recent discussions about diagnostic
>> However, I wondered if there might be more comment, more interest if the
>> arguments were illustrated by examples. I wondered if we might learn
>> something if, for example, the difficulties of diagnosing a Myocardial
>> infarction were compared to say a Takotsuba cardiomyopathy (which I
>> understand is not too uncommon).
>> Then I said to myself, is the reluctance to talk about the actual
>> clinical situation in our discussions in some way governed by privacy
>> considerations - and in the US the confining HIPPA regulations.
>> But there should be a way to overcome that by using fictitious stories,
>> modified stories to preserve privacy, very old stories, etc., etc.
>> Would some list guidelines help and get us closer to the actual patient
>> in our deliberations?
>> HAPPY THANKSGIVING TO ALL.
>> Rob Bell, MD
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