Quack, quack, quack! Pretendo's and Endiot's

It is the norm among Cushing's Disease sufferers to have gone to multiple doctors and received little to no help, often even being put down by them.  It can be so discouraging to feel like you are up against a wall, especially when you barely have enough emotional and physical energy to get through the day.  You know you're ill, and you know it isn't as simple as diet and exercise because you were getting continually (and drastically) worse despite keeping up on your routine, or despite making drastic improvements.  You don't care what your diagnosis is as long as it is accurate, but you CERTAINLY are seeking one.  You're sick and you want to get better!  Who wouldn't?  (See my previous post "Diagnosis Seeking" for more on that topic, and lack of logic condemning it.)

Some doctors will run many tests trying to help, but don't really know how to figure out the vast mess of symptoms and signs that come with Cushing's, or really don't know enough about how and when to test or how to interpret the results.  Some refuse to help at all, blaming everything on a lack of exercise and poor diet.  Even endocrinologists, doctors of internal medicine who have then gone for further training in the endocrine system, are rarely up to the task.  We even have nick-names for the worst of them, calling them "Pretend-o's" and "Endi-ots."

According to Corcept Pharmaceuticals (a company that produces one of the few medications used as a treatment for Cushing's Syndrome, and has set up informational resources for Cushing's patients): there are approximately 5,000 endocrinologists in the Unites States, and of that number, only roughly 600 of them have seen a patient with Cushing's.  And let me tell you, one patient (or even 10 or 20) does not an expert make!  Chances are good that FAR more endocrinologists have seen a patient suffering form Cushing's, but they likely didn't recognize the disease and thus the patient went undiagnosed or misdiagnosed.  Studies are coming out suggesting that this disease isn't as rare as it is reported to be, but is more likely rarely-diagnosed. 

For example, according to the April 2005 edition of Endocrine News (in "Unlocking the Mysteries of Cushing's Syndrome"), 2-4 % of all patients with type II Diabetes have Cushing's.  There is a statistically significant number of patients with uncontrollable high blood pressure that have Cushing's Disease as well.  That is a fairly large number of people who are suffering needlessly, being treated only for specific symptoms without the cause of their illness(es) being addressed.  The longer the wait, the more damage is done to their body, often permanent damage.  I pray they get a diagnosis before it is too late.  Please help us spread the word and help us save lives!