I understand what everyone is saying about having a lot of research out there. It is not enough. I have 3 children with diabetes and no one else has diabetes in our family...anywhere. The research that is being done with that is amazing. My brother-in-law just died of brain cancer in March and I am amazed at the research that is done with that and all cancers, especially because there are so many now. I have been hypothyroid since I was 23 years old and that is easily diagnosed with much research. (I am 48) This disease has been around or known for almost 100 years and there are still thousands of men and women and children sufferring needlessly with physical and mental distress and humilliation. The research is out there but it is not being taught to our current physicians or to the med students. They have been told it is rare and they probably won't see this in their carreer. My daughter and I were told this by a pediatric endo at CHOP and from several other physicians and endos. My daughter has gone through every test imaginable for weak muscles, fatigue. Some testing was painful for her and she endured this so that doctors would finally admit that she had this disease and would test her for it. When all was said and done we were told that it must be a weird virus that hadn't been discovered yet. That is so funny that a doctor would believe that before even testing for cushings disease or syndrome. These symptoms in my daughter were so extreme and so obvious and still they would say..."No, I don't think so." Even when her other hormone levels were such a mess, no one would even look at that with any interest. I spent hours and days and nights researching everything and everywhere I could. I made appointments with so called specialists for her just to be shot down again and again. Some of these so called specialists don't put the extra effort into this and our PCP's are relying on them when they find a problem that they can't handle themselves. Yes, the research is there and it is available, but think of the hours and days that we put into this to get where we are and then think again and wonder if any PCP, or endo really has the time once they are in a busy practice to do the same as us. Is it not part our responsibility to force this issue? How many others must suffer out there? How many more mothers and fathers and children for God's sake?
How do we do it? We need a celebrity... a "big" one. Anyone know one personally? Seriously!!! I haven't heard of a celebrity having cushings disease, but it would sure help if that was the case. We need to bring a celebrity or two into our world. It is a world that no one would choose willingly. I have fought for my children's lives since they were little and I just can't stand this now. I have known them so well that when something went wrong with their bodies I informed their doctors and I had doctors that listened!!!! Are we all becoming numbers to these physicians?
Are they taking too many appts. in a day that they have no time for each individual? What happenned to caring about a patient and knowing them as the doctors did years ago. You know... the ones that didn't have the technology that we have today. The ones that would go home after a long day at the office and say to themselves that they needed to find an answer for a certain patient that was sufferring. Guess you can tell I am a little disappointed here as I am sure all of you are too. Can't we do something?
