Author: Admin (---.gtecablemodem.com)
Date: 03-21-02 12:47
Ken,
Doctors are not trained to be courageous. They are not trained to be researchers.
We could perhaps get a National Register if we reported all cases of Sarcoidosis to a central database. But if we were to make sarcoidosis a 'reportable' disease I believe there would be even fewer sarcoid diagnoses than there are now. This medical profession does not like to have to report anything.. let alone have to make a report about a diagnosis that even they themselves are not certain about.
The lack of knowledge about "genetics", "pre-disposition", and "the exclusion process" is overwhelming, and, I think, springs from an over-specialization as well as a lack of personal understanding about immune disease. Take a look at a pulmonologist's comment I recently read:
"It is often difficult...sometimes impossible to differentiate sarcoidosis from asthma. Sarcoidosis can many times affect the airways and cause airway narrowing, wheezing, and pulmonary function test abnormalities that are identical to asthma. It is not rare for sarcoidosis patients to be mis-diagnosed with asthma for years before the correct diagnosis is made."
You know, all the people I know who suffer asthma tell me that a characteristic of an asthma attack is just that - it is a sudden, unexpected, attack. On the other hand, I am sure nobody is going to try and persuade me that non-caseating granuloma are formed in any "attack" time frame. Maybe hours, maybe days, maybe weeks... How can such diverse disease states become confused?
The sentence "..sarcoidosis patients to be mis-diagnosed with asthma for years before the correct diagnosis is made" implies, IMO, that this doctor considers sarcoidosis is on over-riding diagnosis that supercedes any asthmatic diagnosis in a patient. Yet sarcoidosis is defined as the biopsy-verified presence of non-caseating granuloma! And asthma is asthma!
How are we going to ever have this disease diagnosed or treated effectively when doctors don't seem to have a clear picture, in their own minds, of the disease process, and the process of diagnosis by exclusion?
If it weren't so surreal it would be depressing...
Sarc reporting might work if there was just one center of excellence that suspected sarc patients would be referred to. But who would say what is excellence and what is mediocrity? It isn't going to be the medical profession... It isn't going to be a politician...
Sincerely,
Trevor
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