There seems to be a common thread in what many patients experience at the hand of their doctors, such as Les who says: “many endo’s really seem to wear blinkers and do not really pay enough attention to problems”  and Jeanne’s comment: “when I ask our doctor about lifelong effects she blows me off”. The “wide eyed look” that Aimee has seen in response to a question is very common and kind of makes you feel that you’re asking such a dumb question, when the reality may be that the doctor doesn’t know the answer.

 

Fiona’s experience “I do blame it a lot on endocrinologists who buried their heads in the sand and said that I was NOT being overtreated” so the question begs who suffers from this ignorance in the long run? In this one area there has been some solid research to show that overtreatment does cause problems. So why do they not admit it?

 

Aimee reiterates my own feeling that, “I’ve had enough of medical issues being minimized and OF COURSE nothing is contributed to CAH or the medication”

 

So is there a fundamental problem here? Looking at some of these quotes I can only assume that either:

 

1). Doctors don’t know the answers, because they haven’t done any large scale studies of the range of health issues presenting in the ageing population of CAH people.

 

2). They treat us like mushrooms because although they know the answers, they  think that we haven’t the skills or intelligence to process some of the health problems that may emerge in the future and therefore assist us to make appropriate changes to diet, lifestyle, supportive therapies/supplements etc. earlier rather than later.

 

3). Or that these things would have happened to us anyway regardless of CAH or the medications. One can’t argue with this until specific research definitely includes/excludes any connection with common emerging problems.

 

Although we have our suspicions about these cause and effect relationships, doctors are not swayed by anecdotal evidence or stories until sufficient scientific method has been applied.

 

I say, may the onset of these types of studies roll on, thick and fast! The older CAH people among us may not benefit - yet again -  but at least the next generation should.