Giving and Leading: Kidney Disease Organization

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26 million Americans, or one in nine, have a chronic kidney disease and many don’t know it. That sobering number led Tempe native Analyn Scott and her husband to start an organization called 1in9, which hopes to ignite a worldwide movement to promote kidney disease awareness and prevention campaigns, as well as support research and development of treatment options in the field of regenerative medicine. Analyn Scott, Founder and CEO of 1n9, and Raymond Scott, who suffered from kidney failure, will talk about the organization.

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Ted Simons: 26 million Americans, or one in nine, have a chronic kidney disease and many don't know it. That sobering statistic led Tempe native Analyn Scott and her husband to start an organization call 1-in-9 which promotes kidney disease awareness and supports research into regenerative medicine.

Kerwin Brown: My son is one in nine.

Michael Castle: I was one in nine.

Annete M. Smith Willis: I was almost one in nine.

Stephen Perry: I'm one in nine.

Dee Anna Mitchell: I'm one in nine.

Video: One in nine. That's 26 million Americans affected by kidney disease. And most don't even know it.

Stephen Perry: I woke up one morning and my joints and my knee was so swollen I couldn't walk.

Dee Anna Mitchell: I was pregnant and I had headaches. And so they ran the test and found out I did indeed have kidney disease.

Michael Castle: As a result of this stroke, my kidneys shut down. Did not have any paralysis or anything. Just my kidneys shut down.

Video: And if kidney disease does occur life isn't over.

Doctor: With the different dialysis modalities involve including doing dialysis at home the patients do end up living a fuller life.

Dee Anna Mitchell: I have taken control of my health and I think that that's possible for everyone.

Annete M. Smith Willis: A doctor who was treating my mother observed me. And indeed that saved my life.

Raymond Scott: I have been a kidney dialysis patient for 17 years. I have to be there for my wife and my children. I have dreams of seeing my wife and I together at 80 years old.

Ted Simons: Joining us now to discuss kidney disease research and preventing is Analyn Scott, founder and CEO of 1-in-9 and her husband, Raymond Scott, who can talk firsthand about kidney disease. Good to have you here. Thanks for joining us. One in nine, that many folks have kidney disease?

Analyn Scott: Pretty astonishing, isn't it? 26 million Americans, 600,000 Arizonans. And only 90% actually know that they have it. It's a silent killer.

Ted Simons: What causes kidney disease in what do we know about kidney disease?

Analyn Scott: Many different causes. Number one factor and leading cause of kidney disease and kidney failure is diabetes. Second leading cause is high blood pressure, which is actually what claimed my husband's kidneys nearly 18 years ago. Other factors such as lupus, extended use of ibuprofen and other medication to name a few.

Ted Simons: Are there signs or symptoms? Are there some sort of signal, hey, something is not working? Something is not right here?

Analyn Scott: Usually people don't recognize the signs and symptoms until it's too late when the disease has already progressed or when they are at need for dialysis.

Ted Simons: Did you know that something was wrong? How long? 17, 18 years?

Raymond Scott: It was 18 years ago. And I did not know. I went to the urgent care thinking that I had just go get some medication for bronchitis. And the nurse took my blood pressure three times, twice with the machine and once manually. And ran to the back and got the doctor. Not when I found out but they took me to the emergency room. And that's where I found out.

Ted Simons: Because the blood pressure was so high.

Raymond Scott: My blood pressure was high. It was --

Analyn Scott: I think 270-90 when I was at urgent care.

Ted Simons: Good gracious.

Analyn Scott: When he got to the emergency room he was 300/200. His kidneys were done.

Ted Simons: And you felt like what bronchitis and that's it, chest cold maybe, something along those lines?

Raymond Scott: That was it. I felt like I had bronchitis and I just needed some medication to clear it up. And it was a lot more than what I bargained for.

Ted Simons: As far as the treatment is concerned, what did you war began for? What did you wind up getting?

Raymond Scott: I actually started or peritoneal dialysis. It's where you put dialysis in peritoneal cavity and as you walk around, your daily functions, through osmosis, the dialysis occurs. You actually change out the fluid every once in a while. But I also had done, I have had a kidney transplant. And I have done home hemodialysis which I am doing right now.

Ted Simons: Are these traditional, common types of treatment here? And has the treatment changed from when you were first, 18 some odd -- something must have gotten better in 18 years.

Analyn Scott: Things are definitely improving in terms of even the kidney transplant rates in terms of the medications have gotten better. So you can have a longer expectancy of a kidney to last. I think they are saying 10 to 15 years. His brother had donated a kidney to him and we were fortunate that it did last for five years. So it gave him a new lease on life. And after that failed, rejected, he went back on hemodialysis which is in center. Typically patients will go in two to three days a week for about three to four hours. Each treatment just depending on what their needs require. And over the last two years, we have been doing his dialysis from home. I don't have a nursing background at all. But I administer his treatment five days a week. Close to three hours per treatment. Which gives him more flexibility.

Ted Simons: No kidding. I'm sure.

Analyn Scott: Doing it more frequently also is better on his heart. Better on his body altogether. So he has more energy. In fact, more flexability so we have just completed treatment before coming here today.

Ted Simons: Wow. And first of all, how do you feel? How are you doing?

Raymond Scott: I feel very good. I am doing really well doing this home hemodialysis.

Ted Simons: In the years since you have been dealing with this you have seen improvements in treatment, improvements, I would imagine in prevention, in diagnosis, the whole nine yards.

Raymond Scott: Yes, definitely.

Ted Simons: Is that what 1-in-9 is all about? To get people -- what is 1-in-9 all about? This program?

Raymond Scott: My wife could probably answer that better than I.

Ted Simons: Let's ask you. What is 1-in-9? What are we are talking about here?

Analyn Scott: Just to kind of take a step back where this really started, we are advocates with the national kidney foundation of Arizona. And Raymond is going to be one of their celebrity star dancers with "dancing with the stars Arizona" and that will be taking place on the 20th at The Westen Kierland Resort. Ironically I was just looking back through his medical records. And his kidneys failed on February 20th, 1998. He's going to be dancing 18 years to the date since his failure. And so that inspired us going back to when we learned he was going to be a dancer, this is their 10-year anniversary and he is the first dancer that's actively on dialysis. It was exciting to us to be able to show people that kidney disease or dialysis doesn't have to be a death sentence. Here's a man who is dancing and can be active. So with that, just getting the awareness out. We wanted to help others so they don't have to go through this same path that Raymond had to. Had he known that high blood pressure was a leading cause of kidney disease, he would have done more than just take his medicine and think that he was feeling OK. He would have been monitoring it a little closer. 1-in-9 is a documentary that we are filming. And also a movement because it's really grown as a grass roots movement. We want to get into communities, we want to help educate them on some of the risk factors and help with prevention efforts. And then really the third pillar with 1-in-9 is regenerative medicine. What does the future hold? Just to give you an idea, they are doing some amazing things with stem cells, with 3D printers where they would be able to use a patient's own stem cells to be able to have a kidney or a heart transplant or other organ transplant using their own stem cells and not have to be on anti-rejection medication.

Ted Simons: Real quickly, you got the 1-in-9 Roadshow. You are taking this across the country, aren't you?

Analyn Scott: We are.

Ted Simons: Good luck to you. Congratulations. And good luck to you on that dancing program.

Raymond Scott: Thank you.

Ted Simons: Do a good job. We will be watching. Good to have you both here. Thank you very much.

Raymond Scott: Thank you.

Analyn Scott: Founder and CEO of 1n9,Raymond Scott

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