cush research

[hypogirl]

i was just thinking today.... how much research has really been done with cushings... it seems to be a pretty difficult disease to diagnose and a lot is still unknown?????

 

any thoughts???

[Holly]

I don't know hypogirl, I don't think a lot has been done because there are very few of us who have been diagnosed. I'm sure there are more people out there, but getting wrong diagnosis. Seems more research has been done on the veterinary aspect of this disease...

 

Do you know, how disturbing and frustrating it is to try to find answers out there to this condition just to have dogs and cats come up on your search??!! How does that make you feel? I know it makes me feel like a friggin' animal...I am so angry. They may be similar diseases, but the human body is different than that of a dog.

Edited January 19, 2007 by Holly

[maggieloar]

i've been wondering about the same exact thing. i think its so ridiculous that people spend so many years trying ot get diagnosed. you can have all of the symptoms, you can have the tumor, you can even have high test results but you still have to wait and its not okay. i think doctors have just put this idea in our head that htis is how it has to be when you have cushings, that you just have to wait years and years. but if more research was done then more doctors could be aware of the disease, and the disease could become easier to diagnose in a smaller amount of time.

a few years ago i did the walk for diabetes, and i was just thinking. what if we could somehow organize a walk for cushings, just to raise money for research or clinics or whatever needs to be done in order to keep more people from suffering for so long in the future. we cant really change our own situation so much at the time but i feel like we can make it better in the future or something. i know its a long shot, that im only one person and a very sick one at the time, but its seriously like all i can think about lately. i feel like there has to be something we can do to keep people from dealing with this for so long.

i dont know, maybe its just a crazy idea but i feel like there has to be something i can do ya know.

- maggie

[MCF]

I don't think it's actually difficult to diagnose, I think it's difficult to get someone to *consider* diagnosing it.

 

NOT rare, just rarely diagnosed.

[staticnrg]

Hi....

I agree with Susan. THere is actually quite a bit of research out there, and new coming every day. But do doctors read it? No. That's the big problem. If you click on the links in my signature, you'll see just a few of the resources from research that are out there.

 

Hugs,

Robin

[PennyL]

I too agree with Susan. I think there is plenty of research available; it just is not being read by anyone but those who are suffering from it. I think Cushings needs to be brought to the forefront. It needs more media attention; more people need to know how much we have to suffer to get a diagnosis, and then how much more we have to suffer to get cured.

 

My 18 year old son was reading some of my posts and responses and he said "Mom, you should just go on a diet, start working out and gain more weight, oh never mind because then the doctors would just tell you that your not being honest with yourself.?

 

But then I was like, you know, you might be on to something. I should go on a diet and start working out. I should start a video diary of the daily life of a Cushing?s patient. I could get on the scale every morning and show how much I weigh that day, I could tape my workout (on the days that I could actually have energy to workout), I could tape what I eat throughout the day, breakfast, lunch, dinner, snacks. I could video the differences that occur to my appearance on the days I am not feeling well; the red skin, the bruising, the acne, the fluid retention, the stretch marks, hand all the other horrible things that happen to our bodies. I could show them the bathtub after I stand over it every morning to comb my hair so they coudl see how much my hair falls out everyday. I should show the world what it is we Cushies go through day in day out, show them how tried we are, how much pain we feel, and so on. Then when the doctors try to tell me something is not true I could show him/her my video and say "See I am not lying". And then I could send my video out to all the news programs like 20/20, Primetime Investigates, Dr. Phil, Oprah, etc.

 

Even better, maybe a bunch of us could start a daily video diary to send to the different news programs. We have to try to get more attention to this terrible disease that is ruining our lives and the lives of our families. I think that is just one more thing the doctors don?t have a clue about, is how this disease affects our families, friends and co-workers.

 

Sorry, its just that I am very passionate about this and I am trying to come up with something / anything to bring attention to those of us who are suffering and battling this disease.

 

So, is anyone up to doing a daily video dairy with me?

[amanda w.]

There is a lot of research out on cushings. You need to use "Cushings Symdrome" instead of Cushings Disease. John Hopkins I think it is, OHSU in portland OR has great research on this and videos, spine and slull base institute in Pittsburg, Harvord, NIH, NIMH, Mayo, and a number of other sites have resources and information and videos.

 

The dignosis is not really that hard. THe problem is it is rare. Doctors (most) only want to look for what is easy to find. Meaning if you have cough they ASSUME you have a cold, they do not look for lung cancer, if your tired they ASSUME it is somthing like depression, anemia, or somthing like that, somthing really obvious. They do not think cushings, or cancer or things like the such. THey look at the signs and treat you for want is right in from of them, not the root of the problem. they do not try to get to the root of the problem. An we are like Matilda in the movie, doctors silent quote: "I'm big your small I 'm right your wrong" is what most doctors think or say when we question them. This really makes me mad. However, we can not change it. We have to except it.

 

I really can not say much here though, becasue me myself, I am learning to treat myself and be my own doctor, as I have decided to stop here. I have tried again and again and get the same answers. Repeating the same thing over and over again is the defintion of insanity(atleast that is what i am told) so all I can say is there is a lot of research out there. THere is new research being done.

 

Another search you may want to try is to use "SOM230 and Cushings" you will find alot of research here about cushings also. SOM230 is a trial drug in stage 3 last time I heard that is used to treat (not cure) cushings disease. I particpated in this study.

 

Amanda W

[fatnsassy]

There is ongoing research. I participated in some research for Dr. Z while I was out there in CA last week. The problem is, getting all of the Dr's. educated when there is new information out there. Let's compare it to something else. I see it like this. I am a barber and I could cut hair the same way for the rest of my life, or wrap perms the same way for the rest of my life, and think that this it is the best and only way to do it, and be so set in my ways that I would not try something new, even if it has been proven to be better. I could still be doing haircuts all by hand, no clippers involved. It would only be stupidity on my part, but it has been tried and proven, so why change, right? I can cut hair either way, but one way is so much faster and easier!

 

I see Dr's like this! They have learned it one way in school, so when new things come along, why change your thinking on it? Why try something new? You think the old way is the best way, or at least good enough! It is a good thing for us that some Dr's. believe in trying new ways!

 

Gracie

[tamarak]

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?

[tamarak]

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?