stjfs Posted August 4, 2005 Report Share Posted August 4, 2005 Does any know the percentage of new people diagnosed with Cushing's each year? For Cushing's Syndrome I've read from 10-15 people per million each year. What is it for Cushing's Disease- pituitary tumor (2 out of a million)? So many people ask me how many people have this and I'm never quite sure what to tell them. Thanks! Tammie Quote Link to comment Share on other sites More sharing options...
heathers Posted August 4, 2005 Report Share Posted August 4, 2005 I would like to know that too! I have only seen the 10-15 per million numbers. I keep forgetting the disease/syndrome difference. Quote Link to comment Share on other sites More sharing options...
Over 2000 Posts Kristy Posted August 4, 2005 Over 2000 Posts Report Share Posted August 4, 2005 10-15 new cases of Cushings per million is all Cushings cases, steriod induced, pituitary, adrenal, and cancer. Steriod induced Cushings is predominate. 13% of hormone secreting tumors are ACTH secreting tumors. 15% are GH secreting. The stats for GH secreting tumors that cause acromegaly is about 3 people per million per year, so that means ACTH secreting pituitary tumors that cause Cushings Disease are 1-2 people per million per year. That puts adrenal cushings Quote Link to comment Share on other sites More sharing options...
Member of the 1000 Post Club SherryC Posted August 4, 2005 Member of the 1000 Post Club Report Share Posted August 4, 2005 I kind of wonder if that number is much higher than is printed. I live in a very small town of about 7,000 people. I know of at least 5 people in my town with brain tumors(nurses said they are pituitary) and I spoke with a lady that had Cushings, another patient of Dr.L, she had 2 pituitary surgeries and then a bla. I am going to meet her soon. she lives about 2 miles from me. All in my small town. What is going on with our water? sure makes you wonder Hugs SherryC Quote Link to comment Share on other sites More sharing options...
~SuziQ~ Posted August 4, 2005 Report Share Posted August 4, 2005 (edited) I always knew I was one in a million... Seriously... I think if better statistics were kept of Cushing's patients like many other disease then I'm sure there's more of us than recognized. And, of course, many of us go undiagnosed forever.. sadly. Some doctors may see, diagnose and schedule for surgery, one patient in their lifetime of practice. There's not a national registry.. some of us have inquired. Although the CUSH secretary, Lynne Clemens, is trying to keep a record of Cushing's patients, we know that not all patients send her their information. Even if everyone sent their information to her, there's the hundreds who've had Cushing's before this web site was formed and even before the internet, who we will never know as a Cushing's patient. This all goes with one of our favorite sayings: "Cushing's is more rarely diagnosed than rare." True? Who know.....but many of us think it is. Edited August 4, 2005 by SuziQ Quote Link to comment Share on other sites More sharing options...
LeahTM Posted October 26, 2005 Report Share Posted October 26, 2005 yeah, I agree with SuziQ. Cushing's wouldnt be that "rare" if most if not all doctors know how to diagnose this illness. There might be lots of people out their having the same illness that we have but they remain to be not part of the statistics because they dont know what is happening to them. A Cushing's information drive must be done more to make other people aware of it. Just like what some people did on how to make a lot of people know more about AIDS. Well, we're just "lucky" that we have been diagnosed and part of the statistics of this rare illness.. at least we got here earlier before others get diagnosed and this illness wont be rare anymore... cheers! Quote Link to comment Share on other sites More sharing options...
Member of the 1000 Post Club cheryl f Posted October 27, 2005 Member of the 1000 Post Club Report Share Posted October 27, 2005 FYI, If at least 15 are diagnosed per year, and the population is appx 297,524,137 in the US, would that be 4,455 per year? The world population # I found was 6,475,259,016, and would that be 97,125 people appx per year? I'm terrible at math and may not have calculated this correctly.... But I did call NIDDK to see if they could give me an actual figure...we'll see if they call me back. I was just curious at the actual number...amazing that Christy and I found each other here in OKc with it being SOOOOO rare! Love ya, cheryl f Quote Link to comment Share on other sites More sharing options...
AutumnOMA Posted October 27, 2005 Report Share Posted October 27, 2005 You know....the numbers are just amazing to me. I really hope that we get the April 8th day of recognition FORMALLY. I hate to think of all those who may be affected that have no way of knowing what CUSHINGS is....not to mention the lack of education on the part of the medical field. We deserve more...LETS MARCH! ok...I admit, I may not have the energy to march any further than the potty, BUT...I sure wish there was a way to get the word to the masses! Lets call Ellen! I really believe that people in the "spot light" have a power over Amercian's especially....we watch so much TV...I think they should take that responsibility seriously and use it to the greater good. WOW! Listen to me rant! Feeling pretty good today, obviouisly! MUCHAS SMOOTCHES to you all! ~Autumn Quote Link to comment Share on other sites More sharing options...
Member of the 1000 Post Club Adrienne Posted November 16, 2005 Member of the 1000 Post Club Report Share Posted November 16, 2005 This question always gets me too. And the answer is always changing depending on the resource. You know, the new Patricia Cornwell books talks about pit tumors. Its obvious, my mom and sister say [as I have yet to read it] that theyre speaking of csuhings. But never ONCE is that word used. I find that a lot. The news sources speak of cushings as the underlying condition, without ever NAMING it cushings. Annoying! Quote Link to comment Share on other sites More sharing options...
Member of the 1000 Post Club cheryl f Posted November 17, 2005 Member of the 1000 Post Club Report Share Posted November 17, 2005 What's the name of the new Patricia Cornwell book? Is it in the Scarpetta series? Love those books! Cheryl F Quote Link to comment Share on other sites More sharing options...
bethanyhope Posted November 30, 2005 Report Share Posted November 30, 2005 I don't think it is as rare as doctors think. I think it is more common but goes undiagnosed and untreated. Bethany Quote Link to comment Share on other sites More sharing options...
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