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Founder's Story
Doctors Missed His Son's Disease for 20 Years | Ep. 400 with Chuck Knueve
00:23:20
Daniel Robbins talks with retired pharmacist turned author Chuck Knueve about the long, brutal road to diagnosing his son with Cushing’s disease and why he wrote Surviving Cushing’s Disease: A Young Man’s Journey at 73. Chuck explains how the condition mimics common illnesses, why testing happens too late, and how a 20-year delay can leave permanent damage even after treatment. He shares the practical red flags, why families must advocate hard, and the moment he chose to tell the story so others can get an earlier diagnosis.
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Transcript23 lines
- [00:01]
A
It was the 20 years that my son suffered. The story had to be told.
- [00:07]
B
And I know the book is about your son and Cushing's disease and the tragedy of what he had to go through. And I'm sure what you also had to go through.
- [00:17]
A
America is an industrialized nation, probably one of the top nations in the world. But the last that I Knew, we are 15 in our medical care and how we deliver it. But they. I think we need to catch up.
- [00:29]
B
So if there's a parent watching, they're thinking that there could be something wrong with their child, because I know this is rare.
- [00:35]
A
What should they do when there are three symptoms? You should suspect Cushing's disease because no symptom by itself will identify the disease.
- [00:54]
B
So, Chuck, you just wrote this book. Probably the most personal thing that you will ever do in your life is to write this book, and congratulations on that. And we'll get all. We'll get into this. And I know the book is about your son and Cushing's disease and the tragedy of what he had to go through, and I'm sure what you also had to go through. So take me back to the moment when you got that diagnosis.
- [01:25]
A
It was a long process to get the diagnosis. It was not just going to the doctor for one visit. It took over years because the disease itself actually hides itself in many common signs and symptoms that are in other very common diseases. So it's very difficult to diagnose. So it took years to get it diagnosed, much longer than probably it should have. And that's the reason the story is written. It is to make sure that no one else has to go through that long path to get the diagnosis that he finally got. It was a painful journey, but we want something good to come out of this painful journey. And this is why I wrote the book. This. This is why I am out there as an advocate to make sure that Cushing's disease actually becomes more known for people. I've created jingles in the book so that if it's six months from now or if it's a year from now or two years from now, that jingle will stick in their. Their mind and tell them, ooh, this could be that problem, and have them go back and then refer to revisit the book to see, Yes, I think maybe I need to tell this person that the whole point is. The whole point is to make people more aware of Cushing's disease, to get earlier diagnosis. Through all of my five years of researching it, it always come back to that. We need earlier diagnosis.
- [02:58]
B
So and you spent 40 years as a pharmacist and so you knew medicine in the system but yet it still took 20 years for them to diagnose him. What do you think was broken in the system?
- [03:12]
A
You can't point the brokenness to any one person. I think it's the process that is needs fine tuned. And when you look at the guidelines that the endocrinologists from the United Kingdom in the United States developed the guidelines that other doctors could use to diagnosis of disease, it's the guidelines that they use. As I got a bachelor in science and then I went on and got a doctorate in pharmacy and as getting in the doctorate pharmacy we had to take these diseases and then take them through those guidelines and then do case presentations on them. Most of ours were done with more common diseases. This one here is a rare one. So the first time I ever did this one was with my son's disease. And the most difficult part I think is that they do not test soon enough. And some of that is that it's difficult to get the evidence to say that yes, we need to do this at this time. And there's just a vague, vague period there where it could be done, it should be done, but it isn't done. At least that's the way I was taught when I went through pharmacy school. But I'm finding that the medical guidelines are a little bit more vague and they're pretty cumbersome to work through. So I'm thinking the biggest thing is that what I would like to see and I'm speaking to the medical community now, is that take a look at what we have now and let's see if we can make it better. I do not want to point fingers at anyone in particular because it was no one's really problem in particular. It's a system that just needs to be fine tuned. And this is a plea and it's not, I'm not chastising anybody. It's a plea for us to make this better. America is an industrialized nation, probably one of the top nations in the world. But the last that I Knew we are 15th in in our medical care and how we deliver it. I think we need to catch up. They need to close that space between the two. And it's not only the doctors that can do it. It's people who can sign up for the studies so that they can develop the studies and make those studies meaningful, have enough people so that they have enough power in those studies to make better decisions on when testing should be done. And if they can possibly find a better marker to identify it, that would be good, too. The two that they have now are good, but it's been my experience that they're not the first ones that the docs out there go for. And there's just a little bit of a miscommunication there. What should be done first. That's my opinion, though that's not a general opinion. That's just my opinion.
- [06:05]
B
Thank you, Charles. I appreciate that you have, you know, firsthand experience. So you said that no parent should be forced to watch their child suffer as physicians probe the unknown for answers. What point, though, for you, out of this whole process, did the feeling of helplessness turn into that decision to fight the one night?
- [06:27]
A
Well, actually, the battle started first. My wife was the one who says, I think he has Cushing's disease. And she fought first when he was a child at maybe 16 or 17. And I says, yeah, he could. But then I looked at it, and I said, but he doesn't have the profile of a kid that has Cushing's disease. So it didn't quite fit at that time. But by the time he got to young adulthood, what I was taught in school should have raised red flags. And it didn't. And, you know, and you say, well, should I. Should we have said more? My wife was constantly encouraging to get tested, and for some reason, or not, it just took almost 20 years from the one he was 16. He didn't get. We went to that first doctor's visit when he's probably about 16. He got the first doctor that really looked at it. This actually is probably more than 20 years. He's probably 35. Until one general practitioner decided to do the test. And he followed the guidelines spot on. And we finally took a sigh of relief saying that, yes, he finally took. We finally got somebody to hear, and they are finally starting at the right spot. And then he did the first two tests. He said, I need to send you on. The interesting thing about that is, and I think it's an important point to mention to people, is that we were told that we had to get our own endocrinologist and researcher, which for me was not a big problem because I could do that. I was in the field. I knew how. I said I wanted to be at a university hospital, and I want to have an endocrinologist who specializes in Cushing's disease. It cannot be just any endocrinologist. It has to be an endocrinologist that specializes in Cushing's Disease, and by the stroke of God and the help of God. We got a very beautiful endocrinologist at this university, and it's been a delight. Well, it's not a delight to have to go through it, but it was. They were wonderful. But the process of getting there, we got to shorten the time from when we first think until we got to that point. 20 years is too long. The actual normal time for somebody to get a diagnosis, three to five years is what the literature says. This took over 20 years. So people need full and vibrant lives. We need to get the disease diagnosed earlier so that they can get it corrected earlier, because the longer it goes on, the longer the disease causes more and more damage. And then the problem is they can correct the disease, but that damage that has been done he has to live with for the rest of his life. And that's where we are right now.
- [09:18]
B
So if there's a parent watching right now and they're thinking that there could be something wrong with their child, maybe it's. It's this or maybe it's something else, because I know this is rare, but. But there's, you know, many different rare diseases that somebody could have. But if there's a parent that is thinking, I think something is wrong, but no doctor is validating that, what should they do?
- [09:42]
A
Well, my book pretty well explains what happens, and it explains when I feel they should step in and do testing. Anytime beyond that testing, and it's very early on, when I was taught early on in my bachelor degree, is that when there are three symptoms, you should suspect Cushing's disease, because no symptom by itself will identify the disease. When you have the buffalo hump, the little hump on the back of the shoulder, you have the moon face, and you have the stripes on the belly, those are three characteristic signs of Cushing's disease. When they happen together, that should raise the red flag. And that happened early on, but it did not raise the red flag. And then life went on. And then another symptom came on, too, and another one and another one and another one. And they worsened, and they got more. And so it's really. Yeah, it's at the early diagnosis, again, is where the critical point is. And I actually put a jingle in there, and I got criticized for it, that I put the jingle in there because I wanted something salty, simple, in short, that they could cling onto and stick that in the memory, not the whole book. Stick that in their memory to be the trigger, to tell them, okay, go look at this book. I think there might be something there. So anyways, that's that most people are
- [11:09]
B
retiring at 73, yet you decided to write a book. And I'm also an author and I know the process of writing a book is painstaking in itself, not only because it can take a while, but then you have to relive a lot of things that you don't necessarily want to relive. And you then have to put it on paper knowing that other people will read it. And that to me was, was very challenging. What was the moment though, when you realized that you had, you couldn't stay quiet anymore, that you had to get this out there?
- [11:43]
A
It was the moment when I said we were in Covid and we were just as a nation mandated to be quarantined and to stay at home. And so people started to do zoom. And so we had a zoom with my brothers and sisters and the in laws and we were talking and I said, of course I had entertained the idea of writing a book. I just didn't know which one. And they always said, write what you know. And I knew that way early on, but I have never, never found the thing to write about. So I said when I was talking with my bro and sisters that I'm going to start to write a book about Greg's experience with this disease. And my sister teasing, teasingly, and like brothers and sisters do, he says, only Chuck would write a book. And my other brother, brother said to me, like challenging me, have you written the first page? And so I took it as first, maybe was a little put back by it. But then I took it as their way of teasing me to challenge me into writing the book. So that's. Once I declared that, then I went on. But the interesting thing about that is it took years to collect all that information from all the different hospitals because every scene in the book actually happened. It may not be written as it actually happened, but because I can't remember all those things back that many years. But yeah, I forgot I was going to say. Anyways, the interesting thing about that is that I had no formal training on how to write a book. I had college English, but that in me, college English to me did not get along very well. So it was a challenge. I started writing and I said, oh, this is no good. Then I decided I had to join writing guilds. So I joined one and I started to learn how to write a book. What you should use, how you should use the pacing, the flow and the clarity and, and all the things that go belong good Sentence structure and even sentence structure. When you start to talk about college English and college themes in writing a book, they're totally different. So I had to learn. Then I went to a second guild and joined it and learned how to write. And the interesting thing about this is that the guild that I joined, if you know the chosen movie out there, it's a Jenkins. I don't remember his first name, but his father was the one who is the guild that I belong to and has over 200 books out. the time, I didn't know the two were associated. But when I learned it, I'm thinking, wow, somebody upstairs directed me in the right direction so that I would learn how to write this book. I must be. It must be a responsibility. I have to write this book. So once I did that and I learned that, then I started writing, and then the book started to become alive. It became more than facts, because in the book, because I'm a father that's emotionally involved in the story, and I'm a clinician that also knows what should that could have happened. And I put the two together and layer them together. There's no other book out there that does that. So it made the book come alive. And the second, one of the other most important things I did is I made it told from the camera of my son. The point of view was my son all the time, except for the first few chapters. It was my wife, because he was an adolescent, and then she had to be the point of the point of view, but it was a point of view through him. The story has always been about him. The story has always been about to tell the story so that the readers. I'm talking to the readers. I'm not writing for myself. I'm writing the story for them and to them. I went through the book line by line, chapter by chapter, making sure that all the words were working for the readers so that I could impact them with the most beneficial story that I could to. To help them through their journey.
- [15:41]
B
So, Charles, what would you say has given you the courage to be so vulnerable? Because not a lot of people would have done that. Like you said, no one else has written a similar style book about this before. So what gave you the courage?
- [15:57]
A
It was the 20 years that my son suffered. The story had to be told. So that being said, the story had to be told because my son suffered for 20 years. And I thought people deserve more vibrant lives. So if his turmoil, if his pain could cause somebody else's life to be better, I had to do it. If I chose myself, no one chose me to write it. I chose myself. No one endorsed me. No other professionals endorsed me. I didn't ask them. I just said in my own heart, the story had to be told. And I chose myself. And then I went on. And five years after declaring to my brothers and sisters, I was holding my. This book here in my hands. I'd completed the process. I did it. Yeah. And it was. It was just. It was good. Now, there's been a few hiccups along the way, some of them not intentional by me, by my publishers, by anybody else. Just one person who decided to write a negative article about the book, discrediting what it was done. Because one of the things I worried about it was stepping on some of the toes of professional people maybe who should have done something that didn't. I mentioned no names. All names are not anonymous. I don't want to point fingers at anybody. I want the process to be improved. So, yeah, I didn't. I was very careful about that to make sure that it was told in a very respectful, the way, in honored integrity of all people. Because no matter who you are, sometimes I don't know what their situation, what they're going through when they're making their decisions. I can only see what happened and reported what happened. And this is why I kept the book in my son's eyes. It is told through his story because no one sees when the diagnosis is given. They see the diagnosis that is given in the doctor's office. They see the diagnosis that is given in the hospital. They see the discussions in the hospital. But very seldom do they go home and see the 24, 7 that these people go through and that have to live the life. Just to tell you, just an example of one of them. And the surgery was finally done, and he came home to live with us. During the recovery period, every morning it was a slow walk, it was a struggled walk, because his stale and his strength had been robbed. And now he had to rebuild himself. You know, and you say, why did I write that? Why did I make that? Why did I do this? Because I saw that every morning America doesn't see that when people go home with these diseases, what they live through and how their life is. And I saw it. I saw him lose a career. He had a life that was being destroyed by a disease, trying to build a career as a chemical engineer at the same time. And the two were intermingled. And this disease kept destroying his advancement in his career. And that was hard to see as a parent and the day that when he lost everything, I mean, there was nothing left except surgery and start from the bottom again there. I said, no, no money in my checking account is going to keep me from telling this story. I did it.
- [19:44]
B
Well, Charles, thank you for being vulnerable. If you can help one person, I imagine that is fulfilling enough. But hopefully many people who are in the same place that you were, they now can find solace. And what you wrote.
- [20:02]
A
Do I have a minute just to share? You said if I can help one other story. There is an impactful story. A sister in law who's her, her fiance, her daughter. There they are in the process of trying to decide whether she has Cushing's disease. And they are referring back to the book to help them, guide them through. And I talk to them once in a while because now he's going to become part of the family and, and so then I, I can help guide him personally. Not only my book, but because of that book, my experience with it has made my availability to help people, make them more aware of Cushing's disease and then also guide them in the right way. I also guided him. He says you need to tell them to do these tests, but they haven't done it yet. I said, so you've been to the general practitioner. Your endocrinologist is on board. Your next step is to go to a teaching hospital and get somebody endocrinologist that specializes in Cushing's disease. You're there, you need to get that done. And actually, as a matter of fact, I just told him that yesterday. And all of that is because they're reading the book in, in. It's making them aware that no, we can't stop here. So you say, do I have one, want one person to do that? I have one person. I've had other, other persons say so and so I think so and so has that disease. I'm going to give this book to them. You know, I've heard that several times. So it has been impactful. And the thing is, the negative article really kind of set everything backwards because it was somebody who, it was somebody who was pretending to be.
- [21:39]
B
Well, thank you, Charles. I mean, again, I know from an author to an author, it's hard to put those things down on paper that you don't necessarily want the world to know, but you know that the world needs to know. And because, you know, our hope is always that we can impact others through the words that we have on these pages. If people want to get in touch with you, they want to buy the book. How can they do?
- [22:05]
A
So the book available on Amazon, that's also available on my website, talestobetold.com they can buy it through there. There actually is a deal going on now that if they buy a paperback book, they will get an ebook free. So it's available and it's available on multiple platforms. It's available in three other languages, available in French, German and Spanish. For those people who, you know, would be easier for them to read it that way. It's available as an audiobook if there's someone who would be be more at ease to experience it that way. So, yeah, it's available hardback, paper book, eback audio, and then those additional three languages. Well, surviving Surviving Cushing's Disease, A Young Man's Journey.
- [22:59]
B
Thank you, Charles, so much for sharing this. Thank you for being vulnerable and sharing today because we are all about impact here. That, you know, that is my life mission as well as to impact people through the stories of people like yourself and your son. So thank you so much for joining us.
- [23:15]
A
All right, thank you very much for taking the time to spread the news of Cushing's Disease.