Walking in Atlanta & Boston; Wearable Dialyis Machne Receives FDA Approval for Testing

Walking for PKD

From Dan, Member Atlanta Chapter, PKD Foundation

Annual PKD Walk in Duluth, Georgia, October 11

Join us at the Annual PKD Walk in Duluth, Georgia, just north of Altanta.  We will be lending our support to the PKD Foundation in its unique efforts to promote research to find a cure for PKD and improve the care and treatment of those it affects.  As the PKD Foundation states, "A Cure is our finish line."

Once viewed as a hopeless incurable genetic disorder, PKD has emerged as a prime target of study and treatment.  Dan has just completed a five year double blind study of a new medication for PKD, conducted in Colorado and Georgia.  Fear, denial, and especially ignorance of the disease are still the greatest obstacles for a cure.  The PKD Foundation works to advance all areas of PKD research, education and information.  Six hundred thousand Americans and 12,5 million people worldwide, are affected.  That makes PKD the single most common life-threatening genetic disease, globally.

The URL to contribute online is http://walkforpkd.kintera.org/atlanta/pkd1017

Any amount you can contribute will further the cause to find a cure.

 From WCVB.com local ABC affiliate, Boston, MA, by Kathy Curran

Wake up call: Walk for PKD

Video Transcript: I'M WCVB'S KATHY CURRAN. WE'RE HERE AT THE BOSTON WALK FOR P.K.D., POLY-CYSTIC KIDNEY DISEASE. IT'S A GENETIC DISEASE. THERE IS NO CURE. PLEASE CHECK OUT P.K.D. DOT-ORG. WHAT DO WE WANT TO SAY? GOOD MORNING, "EYEOPENER." GOOD MORNING TO ALL OF YOU OUT THERE. "TEAM FIVE INVESTIGATES" KATHY CURRAN KICKED OFF THE BOSTON WALK FOR P.K.D, POLY-CYSTIC KIDNEY DISEASE. THE LIFE-THREATENING GENETIC DISEASE STRIKES BOTH ADULTS AND CHILDREN. THE WALK RAISES MONEY FOR RESEARCH IN THE HOPES OF ONE DAY FINDING A CURE. GREAT CAUSE.  [Read more]

Living with PKD

From Mirror, United Kingdom, By Olivia Solon

It looks like a utility belt, but it's a kidney dialysis machine

The Wearable Artificial Kidney lets patients with kidney disease receive dialysis on the move

Medical researchers have developed a miniature dialysis machine that can be worn on the body to filter the blood of people whose kidneys have stopped working on the move.

The Wearable Artificial Kidney is worn around the body like a bulky utility belt and connects to the patient via a catheter. It weighs just five kilograms and runs on batteries.

“My team invented the device to untether patients from large dialysis machines,” said Dr Victor Gura from the University of California, who developed the device. His research group wants to give people with late-stage kidney failure the freedom and mobility to walk or go shopping while having their dialysis.

Typically, patients receiving dialysis must stay in one place - attached to bulky machines - while their blood is filtered. Sessions of dialysis must happen three times a week for four hours a time.

The new device has been made possible thanks to lighter, more durable batteries and a new type of pump.

So far the device has been mainly tested on animals, but it’s just got the approval from the US Food and Drug Administration to start proper testing on humans.  [Read more]

Story continuation: From HealthCare Inc, Northwest, by Annie Zak

Wearable tech goes to the doctor: UW to test 'wearable' artificial kidney

Trials of the wearable artificial kidney have already been done in Europe, but this is the first test in the U.S. and the first time the test will run for an entire 24-hour period. Patient volunteers will be recruited locally in Seattle and the trial, which was approved in February by the Food and Drug Administration, will last for at least 28 days. The goal is for 10 patients to complete the full trial. [Read more]

From WDSU.com, Channel 6, covering south Louisiana

40-year-old Saintsation, mother of 2 sharing story of kidney disease on 'Steve Harvey Show'

One of our very own Saintsations is making an appearance on daytime television Wednesday.

Kriste Lewis is a 40-year-old married mother of two whose duties also include professional NFL dancer for the New Orleans Saintsations.

Check Out: Saintsations Ready for Some Football

And on Wednesday, Lewis will appear on the Steve Harvey show to talk about her battle with polycystic kidney disease, a condition she was diagnosed with 14 years ago.

Watch: 40-Year-Old, Mother of Two Becomes Newest Saintsation

Lewis will share her story about how she made the decision to get fit and begin crossing things off her bucket list. One of those was making the Saints cheerleading squad after six months of training.

Gift of Life

From South Dade News Leader, by Patrick Sicher

South Dade Teacher Mario Morales Receives Life-Saving Kidney Transplant

The curious thing about certain genetic disorders is the fact that for a lucky percentage, the disease may never manifest itself. For others though, it becomes more a matter of when, and not if. For South Dade High School Science Teacher Mario Morales, his “when” was just months shy of his 50th birthday.

Morales inherited a condition called Polycystic Kidney Disease (PKD), a genetic disorder that causes multiple cysts to develop in both kidneys, necessitating dialysis and eventually a transplant. Being born with PKD never prevented him from doing anything, Morales served several years in the Marine Corps and has been involved in athletics and coaching his whole life.

From Petersburg Pilot, Petersburg Arkansas, By Mary Koppes

Making sisters out of strangers:

A kidney transplant brings two Petersburg women together

Long-time Petersburg residents Joey Doyle and Beth Richards were small-town strangers before an unlikely event brought them together last year.

"I kind of knew who she was, but we had never really socialized or anything like that," Doyle said. "We're sisters now."

Not unlike twins, they solidified their sisterhood in a hospital room. But Doyle and Richards don't share a mother, they share an organ. It was a kidney transplant that brought them together.

Joey has polycystic kidney disease (PKD), a genetic disease that causes cysts to form on the kidneys, decreasing their function over time and causing other health problems like high blood pressure.

Joey inherited the disease from her mother who passed away at age 34 from a cerebral hemorrhage. At the time Joey was 10, the oldest among her three siblings.

"I don't think they realized that she had the disease at the time," Joey said. They later found out she had PKD which is linked to such hemorrhages.

After identifying the disease, Joey and her siblings learned that there is a 50 percent chance of inheriting the disease from a parent who has it.

"They thought that any one of us could have it," she said.

The first sign that Joey had PKD showed up in her late twenties in the form of high blood pressure, a common first symptom of the disease. The problem was exacerbated by the increased strain on her body from pregnancy. "It got so bad with my second child, he actually was a C-section baby." Since then Joey's been on progressively more and stronger medication to help regulate her blood pressure.

As the years passed Joey raised her children with her husband George and worked in the Petersburg elementary school as a reading specialist. Along the way the cysts on her kidneys grew and her kidney function was slowly decreasing.

In her daily life Joey continued taking medication to regulate her blood pressure, but she skirted another common symptom of PKD.

"I was very fortunate, I never had any pain, but many, many, many people with this kidney disease have a lot of pain," she said. Flank pain and cyst pain can both be caused by the growing cysts on the kidneys.

Joey tried to lead as healthy a life as she could, but the inevitable eventually happened.

"Being a healthy person can only last so long before you have to do something about it," she said. "By the time I was 50 they're saying 'ya know, you're gonna have to start thinking about this because you're going to need a transplant or something.'"

Late in 2011, Doyle wrote a letter explaining the disease and her need for a kidney donor. Her letter was published in the Petersburg Pilot and she also sent it out in her annual Christmas cards to friends and family.

People started coming forward from near and far to begin the lengthy process of tests and procedures. In town, Angel Worhatch was among the first people to begin the process. After going through several sets of tests, Angel made it as far as the final testing at Virginia Mason hospital in Seattle in 2012.

"She's the one that got the closest before Beth," Joey said. "She actually went down and went through the testing only to find out that there was something minorly wrong."

Though the minor problem wouldn't affect Angel's health, it meant she wasn't able to donate her kidney to Joey.

After Joey's initial letter in the paper, Petersburg Pilot publishers Ron and Anne Loesch ran a weekly classified ad saying that Joey was in search of a kidney and providing contact information for interested potential donors.

Locally the ad raised awareness and many people came forward, making it through various stages of testing. But as the days passed in 2012, no perfect match had been found.

Joey said she experienced the ups and downs of hope and disappointment as people came forward and began, and eventually ended, the process.

"You're afraid to even think that this could possibly happen, practically until the day of surgery," she said, though she tried to keep her faith by praying and repeating what became her personal mantra "have the faith, keep the faith."

Meanwhile a chance encounter prompted Beth to make a call she'd long been thinking of making. [Read more]

Its Time to Walk for PKD, Walking New Zealand

Walking for PKD

From Sault Star, Sault Ste. Marie, Ontario, Canada, By Brian Kelly, Sault Star

Dialysis patient grateful to be alive

There's lots of ways kidney disease has affected Christina Palmer's life.

She wants other people to know a little bit more about the condition that forces 9,800 Ontario residents to get dialysis.

Diagnosed with polycystic kidney disease at 19, the Bruce Mines resident started doing eight hours of dialysis daily in March 2013.

“It's a long process,” said Palmer, 43. “It sure takes a lot of your time, but at least I'm alive.”

She wants to get a kidney transplant, but acknowledges her health has to improve and she has to be mentally prepared before that operation can happen.

Declining health forced her to quit her job as a cashier at Heritage Home Hardware in Bruce Mines in mid-August.

“(There's) lots going on with me,” said Palmer Saturday before the start of the 11th annual Kidney Walk at Roberta Bondar Pavilion.

She hopes the fundraiser, held provincewide in 43 communities, helps build awareness about a disease that affects, or has the potential to impact, 1.5 million Ontario residents.

“People just need more knowledge,” she begins, before her stepmother Mimi Bouchard adds “to know what people are experiencing with this disease.”

Palmer's kidney disease is hereditary. Her mother and her two sons also have the genetic kidney disorder.

Palmer and Bouchard were part of a team, 50 Rocks, at the weekend fundraiser. Team captain Shirley Pulkkinen is a social worker at Sault Area Hospital's renal unit. She's also a member of Kidney Foundation of Canada's Ontario board.

Her team, with a monicker chosen to reflect the association's 50th anniversary and her 50th birthday this year, was made up of dialysis patients such as Palmer, family members and health-care professionals.

An 11-year-old granddaughter of one team member donated $5 from her allowance in honour of her grandfather. [Read more]

From The Scoop, New Zealand

Kidney Donor Walks New Zealand For Cause


A Whangarei woman, who donated a kidney to her husband, is setting off today to walk the length of New Zealand to encourage others to donate their organs.

There are currently 170 Northlanders undertaking dialysis to keep them alive. Of these, 36 are medically suitable to be listed on the national kidney transplant list and are waiting for a suitable donor.

The main cause of kidney failure in New Zealand is diabetes. Northland statistics from 2011 show that 32.2 per cent of Maori were affected by diabetes, 1.7 per cent of Pacific Islanders and 66.2 per cent of other nationalities.

Currently 71 Northlanders have had a functioning kidney transplant and Hugh Cole-Baker is one of these, thanks to the generosity of his wife Ros.

Mr Cole-Baker struggled with kidney disease for 10 years, resulting in renal failure and the need for dialysis, before his wife donated one of her kidneys last year.

The transplant was a success and, with Hugh’s new lease on life, the couple are passionate about reducing the waiting list of the 600 New Zealanders in need of a transplant.

Says Mrs Cole-Baker: “The only way to avoid dialysis is to have a kidney transplant from a deceased donor or a living person. Donating a kidney will make a real difference to the life of a person with kidney disease. In the words of one donor, ‘You'll never do anything better than donate a kidney’.”

The Hugh-Bakers, who run a Whangarei Heads-based bed and breakfast, set off from Cape Reinga today to undertake the Te Araroa Trail with Mrs Cole-Baker walking and mountain biking and Hugh arriving at each destination via campervan. At each stop they plan to share the facts about live kidney donation and the benefits of a healthy lifestyle, conducting talks in towns and handing out brochures

They aim to be in Wellington by Christmas and are allowing up to five months to reach Bluff. [Read more]

From The Daily Observer, Pembroke, Ontario, Canada, by Sarah Hyatt

Pembroke kidney walk kicks off Sunday

In the last two decades, the number of Canadians being treated for kidney failure has more than doubled.

Each day, an average of 15 people are told that their kidneys have failed.

The disease, often referred to as 'silent killer,' usually starts slowly and progresses over a number of years.

According to the Kidney Foundation of Canada, as many as 600,000 Canadians may be at risk right now, and not know the signs of the disease - because kidney disease describes a variety of diseases and disorders that affect the kidneys.

However, most diseases of the kidneys ultimately do the same thing and attack the filtering units of the organs or what are also known as nephrons. The attack damages the nephrons' ability to eliminate wastes and excess fluids.

The two most common and preventable causes of end-stage kidney disease are diabetes and high blood pressure, although some kidney diseases like polycystic kidney disease, for instance, are also inheritable.

The scarier truth is kidney disease can strike anyone at any time and at any age.

There's no cure. And when kidneys fail, dialysis treatment or transplants are the only option for those suffering.

This weekend, however, people here in Pembroke have the chance to make a difference. People here have the chance to help increase awareness.

"There are several ways kidney disease can affect someone," Heather Sutherland, one of the organizers for the Pembroke Kidney Walk said. "Increasing awareness has never been more important," she added.

This weekend's walk will take place on Sunday. Registration is at 1 p.m. and the walk begins at 2 p.m. at Pembroke's Waterfront Riverwalk Amphitheatre.

Sunday is the only day dialysis isn't offered at local hospitals, Sutherland explained. That's why the walk for the last eight years or so always take place on the Sunday, so patients can participate too.

"Our family, as many know, has a personal connection to kidney disease," Sutherland went on to say. "But the truth is kidney disease affects a lot of people. More than people may know. One in 10 Canadians have kidney disease and millions more are at risk. Those are pretty intense statistics."

The kidney walk, which takes place in communities across the province, is the Kidney Foundation of Canada's largest fundraiser of the year, Sutherland added.

Dialysis is offered in Pembroke, Renfrew and Barry's Bay so kidney disease is not just a problem elsewhere in Canada, Sutherland pointed out. "It's an issue here in our communities," she said.

On Sunday, it's about celebrating the wins and also taking the steps towards a better future for so many struggling and for those who will struggle with kidney disease, Sutherland explained.

The goal for the Pembroke non-competitive walk is to raise $12,000. More than $4,700 has been raised as of Sept. 17. [Read more]

From Herald Argus, LaPorte, Indiana

Families unite in effort to end genetic kidney disease

This year, Jeff and Laura Moyer of La Porte, as well as thousands nationwide, will come together and walk in support of those affected by polycystic kidney disease.

PKD is one of the most common, life-threatening genetic kidney diseases affecting thousands in America and millions worldwide. It is the fourth leading cause of kidney failure, and there is no treatment or cure.

The 2014 Northern Indiana Walk for PKD is planned for Saturday at Creek Ridge County Park with PKD patients, their families and friends fundraising and walking together to unite to fight and end PKD. Registration is at 9 a.m., with the Walk beginning at 10 a.m.

Jeff and Laura Moyer participate in the Walk for PKD for Laura's immediate family (15 of them including Laura herself), who has Autosomal dominant polycystic kidney disease.

Learning about ADPKD and how to care for has been difficult at times prior to Laura's Transplant in 2011. Her daily care requires multiple medications, monthly labs, etc. all caused by ADPKD.

Despite the challenges, the Moyer family counts their blessings daily in having a happy, beautiful life and family.

The annual Walk for PKD is the signature fundraising and public awareness event for the PKD Foundation and is the largest gathering of PKD patients, family, friends and supporters; more than 11,000 strong.

More than 50 walks occur every year in cities across the nation. Since 2000, the Walk for PKD has raised nearly $22 million.

This money raised supports the PKD Foundation's efforts to fund research to find treatments and a cure, and to provide information and support to people affected by PKD.

"The Walk for PKD is an opportunity for our family to raise awareness and money for research and to support other families going through the same thing," Laura Moyer said. "The idea of being able to do something for future generation means more than I can say." [Read more]

Living with PKD, Start a Conversation

Ottawa Magazine, Canada, PKD Foundation of Canada

PKD: Time to Start a Conversation

Polycystic Kidney Disease (PKD) is one of the most common, life-threatening genetic diseases. Sadly, conversations surrounding the disease are very uncommon. Jeff Robertson, Executive Director, PKD Foundation of Canada and Arie Pekar, PKD patient and transplant recipient, share their stories. Visitwww.endpkd.ca to learn more.

From The Legal Record, Johnson County Kansas, By GILES BRUCE

Teacher’s organ donation inspires others

You wouldn’t guess from looking at the two men that they underwent organ transplant surgery earlier this year. But that’s just what Lawrence middle school teachers Scott Forkenbrock and Mike Wormsley did, when Forkenbrock donated a kidney to his colleague in January.

Nine months later, they’re both back teaching at Liberty Memorial Central Middle School. Wormsley no longer needs dialysis, and Forkenbrock has returned to his physically active lifestyle.

Forkenbrock’s generous act is even inspiring others. After a friend heard about what he did, she decided to run the New York City Marathon in November by raising money for the PKD Foundation, which spreads awareness about the kidney disorder that had Wormsley on the transplant waiting list before his co-worker came to the rescue.

“It was nothing I’d ever heard of anyone doing before,” said Amanda Wittman, 30, an Olathe sign-language interpreter who has pledged to raise $3,500 for the PKD Foundation in order to run the marathon, which her husband and Forkenbrock and his wife will be participating in as well. “You read about it with family members and loved ones, but to donate a kidney to a co-worker, I was just amazed. After seeing him go through that surgery, I feel honored to know him.”

Forkenbrock, 43, acts like it’s no big deal. He did the research ahead of time and found out he could donate a kidney and be back to 100 percent in a matter of months. He was more concerned about Wormsley, who hadn’t been himself after experiencing kidney failure two years ago. He had no energy, could only work part-time and was considering early retirement, all due to polycystic kidney disease, a hereditary condition that causes cysts to develop on the kidney.

After successfully undergoing the transplant at Kansas University Hospital in January, the two men were back to teaching within seven weeks. And nine months later, Wormsley is his old self again.

“I feel like I’m pretty much back to where I was before my kidney shut down,” the 62-year-old said on a recent day at the Lawrence middle school. “I’m working full-time. My energy is up. My health is good.” [Read more]

Tolvaptan Research Update, PKD Walks, Dialysis Solution Shortage

PKD News

From PRUrgent, PKD Foundation of Canada. Hamilton Chapter

Local Nephrologist to Give Update on Polycystic Kidney Disease Research Nephrologists are working towards an improved understanding of how to prevent the progression of kidney disease. Dr. Scott Brimble MD FRCPC will discuss potential therapies for polycystic kidney disease (PKD). FOR IMMEDIATE RELEASE Recently, research has shown that a drug called Tolvaptan can dramatically slow the development and progression of polycystic kidney disease (PKD) in animal models, and another drug (octreotide) can delay the development of both PKD and polycystic liver disease and may prove to be a potential treatment option for people with liver involvement. Dr. Scott Brimble will discuss these among other potential therapies in his presentation on September 28 in Classroom B of the Juravinski Innovation Tower at St. Joseph's Healthcare Hamilton. The Hamilton Chapter of the PKD Foundation of Canada hosts free informational support meetings six times a year for PKD patients, their families, friends and caregivers. A research overview is offered annually to help members remain current on PKD research developments and so that newly diagnosed patients can learn about the progress science is making to halt this inherited disease. PKD affects an estimated 1 in 500 people worldwide. [Read more]

From PKD Foundation of Canada

Register Today for the 2014 PKD National Symposium

We’re excited to announce that we will be hosting Canada’s very first PKD Symposium on Saturday, November 22nd! The 2014 PKD Canadian Symposium is open to the public, and will include participants from the PKD medical community and various renal healthcare centres, as well as PKD patients, their families and loved ones.

With the Foundation’s support and that of our partners, we are planning a day filled with valuable information and subject matter relevant to those affected by polycystic kidney disease. We will be hearing from top Canadian and International Key Opinion Leaders in the field; learning about important ways to manage various aspects of one’s PKD diagnosis.

Topics will include:
Eating Healthy with PKD
Learn the Facts: The Basics of ARPKD & ADPKD
Understanding Living Kidney Donation
Update on Canadian Clinical PKD Research
Dealing with the Emotional Aspects of Living with a Chronic Disease

Light breakfast, snacks, lunch and beverages will be provided throughout the day. There is no fee to attend, but we do ask that you register online no later than October 17th

.
We look forward to seeing and hearing from you during the 2014 PKD Canadian Symposium, as we work together to improve PKD awareness and patient care.

Dialysis Concerns

From Los Angles Times, By STUART PFEIFER, CHAD TERHUNE

Shortage of in-home dialysis solution has patients worried
"We definitely consider this a critical situation. The FDA is doing everything we can to address the problem."
- Valerie Jensen, associate director of the Food and Drug Administration's drug shortage program

Unlike the hundreds of thousands of Americans who drive several times a week to a dialysis center, Joanna Galeas relies on an increasingly popular at-home alternative to treat her kidney failure.

Galeas, a 30-year-old Los Angeles resident, is among tens of thousands of U.S. residents who use peritoneal dialysis at home. She fills her abdomen with a sterile solution that helps remove toxins from her blood, a function ordinarily performed by healthy kidneys.

Now, Baxter International Inc., the nation's leading supplier of the home dialysis solution, says it can't keep up with demand and has started rationing the product, directing physicians to limit the number of new patients to whom they prescribe the treatment and reducing the size of shipments sent to existing customers.

Last week, Galeas' shipment of the lifesaving solution didn't arrive, she said. When she was down to her final dose, Baxter made an emergency shipment to her home.

"I was freaking out all weekend until Monday when it arrived," she said.

Baxter, based in Deerfield, Ill., blamed the shortage on an unexpected increase in demand, which it said has outpaced its ability to produce the solution. The company said that the number of U.S. patients using dialysis solution increased 15% in the second quarter compared with a year earlier and that demand for the product "has never been stronger."

The shortage comes as a record number of people in the United States rely on dialysis because their kidneys failed; the U.S. dialysis population has more than doubled since 1995 to more than 400,000. [Read more]

PKD Awareness From Bedford Daily Voice, Bedford, NY Support People Affected By Kidney Disease At Walk In Bedford Memorial Park BEDFORD HILLS, N.Y. -- The Hudson Valley Chapter of the PKD Foundation will come together and walk in support of those affected by polycystic kidney disease on Saturday, Sept. 20 at Bedford Hills Memorial Park. Registration for this year’s event is at 9 a.m., with the Walk beginning at 10 a.m. “Walk for PKD is a wonderful opportunity to truly engage the entire community offering a hands-on experience to help understand PKD,” said Darien DaCosta, chapter coordinator of the Hudson Valley Chapter of the PKD Foundation. "We are looking forward to welcoming families, friends and individual supporters to walk with and raise the funds necessary to find a cure for PKD.” Over the past decade, the chapter has raised in excess of $580,000 with more than 1,900 walkers participating. [Read more] From Newark Post, Newark, Delaware Delaware Walk for PKD Saturday, September 20th starting at 9:00 AM and ending at 1:00 PM EDT. We Need You To Walk in 2014 — Unite to Fight PKD Polycystic kidney disease (PKD) is one of the most common, life-threatening genetic diseases affecting thousands in America and millions worldwide. There is no treatment or cure. You can help bring a treatment within reach. The Walk for PKD is the PKD Foundation's largest annual fundraising event. Funds raised from Walks across the country make up nearly one third of our annual budget. The more money our walkers raise, the more we can do in the fight to end PKD! You can help by joining the Walk as a participant, volunteer or donor. Together, we can walk boldly toward a future where no one suffers the full effects of PKD From KSDK.com, St. Louis. MO Walk for PKD this weekend ST. LOUIS – PKD, or polycystic kidney disease, affects 1 in 500 people and is the fourth leading cause of kidney failure. This weekend, you can help those who suffer from it. Glen Kemper joined Newschannel 5 at noon to talk about how PKD affects the body. Watch the video player above to learn more. The Walk for PKD will be held Sunday, Sept. 14 at the Sons of Rest Pavilion inside Tower Grove Park. Walk registration begins at 9:30 a.m. and the walk begins at 11:15 a.m. If you would like to register for the walk, visit the Walk for PKD website.

Gratitude & PKD Awareness Day

From PKD Foundation

Dallas Community Leader to Host Gratitude Benefit Honorees

"The PKD Foundation and the people associated with it are an energetic group," says Ralph Hawkins. "I'm delighted to be connected with the folks working to find a cure for PKD."

Hawkins, a community leader in Dallas, and chairman of HKS Architects, will host a reception at his company on October 30 to honor those who will receive awards at the second annual Gratitude: A Celebratory Benefit for the PKD Foundation. He is also the incoming chairman of the Dallas Regional Chamber.

"I was invited to host a reception by the PKD Foundation," he explains. "I'm very interested in the advances being made in kidney disease research and the Foundation is taking a very active role, which I'm happy to support."

While he doesn't have PKD, Hawkins does live with a kidney transplant as a result of Alports Syndrome. This year marks his 20th year post-transplant.

But Hawkins emphasizes that transplants aren't the long-term answer. He feels strongly that research is the best solution to stop the disease for good.

"Genetic research is making huge inroads right now," he continues.

Hawkins is also appreciative of the role the PKD Foundation plays in raising awareness of PKD.

"Kidney disease is more prevalent than most people realize, but it's a silent disease," he shares. "I would like to see the nation more focused on treatments and a cure.

"The PKD Foundation is doing a great job of gaining attention for kidney disease and supporting the people who live with it."

A Reception to Meet the 2015 Gratitude Benefit Honorees
Thursday, October 30, 5 to 7 p.m.

PKD Awareness

From News Wire Canada, PKD Foundation of Canada

Today is National PKD Awareness Day

Speak to Canadians fighting a life-threatening kidney disease

TORONTO, Sept. 4, 2014 /CNW/ - While 46-year-old Cheri Barton looks like she is nine months pregnant, she isn't.

Cheri has autosomal dominant polycystic kidney disease (ADPKD), a life-threatening, genetic disease that causes multiple cysts to form on the kidneys, resulting in massive enlargement of the kidneys (up to three to four times their normal size) and can impact the function of surrounding organs, like the liver.1 ADPKD can also lead to deterioration of kidney function and in some cases, kidney failure.2

Weighing approximately 35 pounds combined, Cheri's enlarged kidneys and liver constantly push up against her abdomen and other organs, resulting in hernias, frequent pain and discomfort. Her kidneys are functioning well below average, and without treatment to help slow the progression of the disease, Cheri will likely end up on dialysis or in need of a transplant. Cheri is among the 35,000 to 66,000 Canadians who have ADPKD.3

"PKD Awareness Day, for me, is an opportunity to raise awareness about a condition few people know about," says Cheri. "This is a condition that not only affects the individual, but their family as well."

Cheri is available for interview and can speak to how ADPKD has impacted her life and what she is doing to help manage the condition.

Jeff Robertson, Executive Director, PKD Foundation of Canada is also available for interview and can speak to how ADPKD has impacted his own family and what his organization is doing to help make a difference.

For more information about ADPKD and to find out more about what the PKD Foundation of Canada has coming up, visit endpkd.ca. [Read more]

From KENS News, San Antonio, Texas

Walking To Cure PKD!

Thousands of Americans and people worldwide are living with Polycystic Kidney Disease but the good news is there is hope! Joining us to talk about PKD and how you can help find in finding a treatment and cure for it are Dr. Adam Bingman with Methodist Specialty and Transplant Hospital, Shonale Burke, and Patti O'Grady Ruffin.

SAN ANTONIO WALK FOR PKD

OP SCHNABEL PARK

GRAFF PAVILION

SEPT. 13, WALK - 8:30 A.M.

1.800.PKD.CURE

FOR MORE INFORMATION:

walkforpkd.org/sanantonio

pkdcure.org

Kidney Donations

From Clayton News Daily, Jonesboro, Georgia, By Heather Middleton

Jonesboro resident, Randy Daniel, is hoping for a life-saving kidney donation

Randy Daniel needs a kidney.

The lifelong Jonesboro resident has been fighting polycystic kidney disease his whole life.

He was diagnosed at 15 and now at 58, his kidneys do not function.

PKD is an inherited disorder that causes clusters of cysts to develop on the kidneys, according to the Mayo Clinic website. In Randy’s case, he did not inherit it. A gene mutation is the source of his disease.

“There’s no reason for him to have it,” said Randy’s wife, Pat Daniel. “He’s 1 percent of the total people who have it.”

As a result, he attends dialysis three times a week for several hours. The machine filters out toxins, waste and extra fluid in the blood — just like real kidneys.

But dialysis comes at a cost physically.

“Dialysis put a strain on the heart muscles and many people die from a heart attack,” Pat said.

To gain access to his body’s blood, Randy has a fistula on his upper right arm. A fistula is created when doctors join an artery and vein to make a large blood vessel.

Two 14-gauge needles, about .083 inches, are inserted into the vessel. One removes the toxic blood, pushing it through a filter, while the second sends the blood back into his system.

The treatments leave him feeling sick, most times nauseous, and tired.

I’m usually wiped out,” Randy said.

Dialysis also leaves him feeling thirsty. Because his kidneys do not function at all, Randy has to watch his fluid intake closely. He can only have 32 ounces per day.

“I crave water so badly,” Randy said. “Sometimes I’ll wake up in the middle of the night and my mouth is so dry.”

His diet is also limited. Pat said there are many restricted items including mundane foods like lettuce and cabbage.

“The body turns the food into liquid,” she said.

Fluid becomes his enemy. Twice this year, Randy has been hospitalized with pneumonia because too much liquid has accumulated in his lungs. Despite this, Randy said he is blessed to have the machine.

A new start

In 2003, Randy had a chance at a new start to life. He received a kidney from his cousin.

“I’ll never forget how good I felt,” he said. “I can’t describe the feeling.”

He said everything was brand new and he felt so good that he was up walking around just hours after surgery.

“I was so thankful for the kidney,” he said. “I still hit my knees every day for it.”

Following the donation, he was taking immuno-suppressant drugs so his body would not reject the new organ. Six months later, he was infected with West Nile virus which damaged the kidney and ultimately led to its failure in 2007. Since then, Randy has depended on dialysis to keep him alive. [Read more]

From The Telegram, St. Johns, Newfoundland, Canada, by Steve Bartlett

‘It’s a disease that’s fatal at some point’

Organ donation is eventually the only option for people with polycystic kidney disease

Averell Childs figures he’ll die young.

He expects something called autosomal dominant polycystic kidney disease, or PKD, will take him.

Living with it is a burden, but he does what he has to.

“A lot of people plan their retirement and what they are going to do with their golden years. The realist in me knows that I don’t have that option. I’m probably going to die at a young age,” he says. “I know that’s going to be the long-term impact.”

Today is the first National PKD Awareness Day. Canadians are sharing their plight with a disease that starts with cysts on the kidneys.

“The cysts grow and burst and create scar tissue,” explains Childs. “Eventually scar tissue becomes the dominant part of the kidney and it renders the kidney less functional to the point where it becomes non-functional.”

The 49-year-old Conception Bay South resident discovered he had PKD in his late teens or early 20s after he started suffering gout.

His dad suggested it was part of the disease “they” have.

PKD is hereditary and it eventually claimed his father. It’s also taken his grandmother and other relatives. His 50-year-old cousin and friend was recently put on dialysis with it.

“For the most part, it’s a disease that’s fatal at some point,” says Childs, who’s originally from York Harbour, a west coast community where PKD is well-known.

But rather than give up, he’s doing what he can to manage the disease and live a regular life.

He eats healthily, watching portions as well as salt and protein intake.

“I’m the guy at the grocery store picking out the smallest steak,” Childs jokes.

Childs also hits the gym regularly. He’s among a fitness minority — he actually enjoys the treadmill.

“I’m a big believer in the fact that regular exercise is a good medicine for anything that ails you,” he says. “I’d like to think it’s helped me control my blood pressure, which is one of the things they try to get you to do to manage PKD.”

There’s no cure or treatment. A kidney transplant is the only possible option. [Read more]

Tallahassee Democrat, by Helen Schwarz

Helen Schwarz recovering from kidney, liver transplants

Editor’s note: Helen Schwarz, administrative manager for the Tallahassee Democrat newsroom, has polycystic kidney disease and had a kidney transplant, followed by additional surgeries, in late 2013 and early 2014. The disease affects about 600,000 people in the United States, according to the National Institutes of Health. This is an update on her ongoing journey to health.

A year ago, on Sept. 4, I wrote an article on polycystic kidney disease for PKD Awareness Day telling you about this silent killer and how I was fighting for my life. Today I am updating you on my story and my battle with PKD.

In July 2013, Tallahassee Democrat Executive Editor Bob Gabordi wrote a blog asking the community to help save my life by becoming a living donor. (Thanks, Bob, for being on my lifesaver team). A very kind and generous man quietly responded and gave me another chance at life.

Bob Mayo (Padre) donated one of his kidneys because he felt called by God to help me. I did not know Padre until I met him after I returned to Tallahassee after my kidney transplant. He is a very humble person who wanted no super-hero recognition, but he is a super hero in my mind for giving up one of his kidneys to me, a complete stranger.

On Nov. 1, 2013, at the University of Maryland Medical Center (UMMC), I underwent a double nephrectomy and kidney transplant. My polycystic kidneys were removed, each weighing about 7 pounds, about the size of two newborn babies. I lived in temporary housing in Baltimore near the University Medical Center for six weeks for follow-up care while adjusting to more than 14 daily medications to keep my body from going into rejection.

Finally, I was able to return home Dec. 15. I was grateful to be home and enjoyed the holidays with my family.

In February, I started to swell and wasn’t feeling well. I went to Baltimore for my three-month check-up. I was immediately admitted to the hospital on Feb. 9. My kidney was starting to fail, not because of rejection, but because of polycystic liver disease (PKL). The weight and size of my liver was crushing my donated kidney. On Feb. 14, I was told I was dying, and if I left the hospital I would be sent back to Tallahassee under hospice care. [Read more]

How to Find a Kidney Donor

Finding a Kidney Donor

From Reporter-Herald, Loveland, Colorado, By Shelley Widhalm

Gary McCormack of Loveland helps wife, Phyllis, find a kidney donor, now wants to help others needing live kidneys

When Gary McCormack of Loveland learned that his wife, Phyllis, needed a new kidney, he pulled out a restaurant napkin and started brainstorming with her.

"He told me to concentrate on keeping yourself healthy, and I'll find you a kidney," said Phyllis McCormack, who as a regular exerciser walked five miles a day until her surgery on May 15. "He was my kidney finder. He was my PR guy."

The McCormacks, both 75, brainstormed ways to find a live donor for Phyllis McCormack, who in February 2013 was told she was in stage 4 of kidney failure, caused by her lifelong condition of hereditary polycystic kidney disease, something she learned she had 35 years ago.

Polycystic kidney disease, which killed her mother and other members of her family, caused dozens of benign cysts to form on her kidneys, enlarging them over time and rendering them defunct. With a new kidney, the disease will remain but will not attack the transplant, she said.

In August 2013, Phyllis McCormack was interviewed by the transplant team at the University of Colorado Hospital Denver Anschutz Outpatient Pavilion and told she needed to get on the waiting list for a new kidney.

"How the hell do we find a kidney?" Phyllis McCormack said about their brainstorming session. "We were writing down ideas as fast as they came to us."

Finding a Donor

Their ideas centered on finding a living donor, something they were able to do within nine months, avoiding having to put Phyllis McCormack on dialysis. Now, Gary McCormack, who retired from working in marketing for Hewlett-Packard, wants to guide others through the process he went through with his wife.

"You've got to get up on your feet and find a kidney," Gary McCormack said.

The day of the napkin list, the transplant team had advised Phyllis McCormack to get on the United Network for Organ Sharing list to find a cadaver kidney, which would require a three- to five-year wait time with 115,000 people already needing one. The team informed her that finding a living donor would be optimal to speed up the process, though being on the list is required either way, Phyllis McCormack said.

"We decided to go with a live kidney, because, number one, they're more successful. They last longer," Phyllis McCormack said. "And the transplant is easier."

Following their discussion, Gary McCormack got to work right away, putting posters around town and messages in church bulletins about his wife needing a kidney. He wore a black T-shirt with white lettering every day until April 2014 when the McCormacks found a donor.

The T-shirt said "Kidney Needed Save a Life" and included a phone number to be tested as a potential donor.

"The goal of it was to have people ask, "What's your T-shirt?'" Gary McCormack said.

Gary McCormack would then explain about his wife needing a live donor, which is a relative or healthy person matched by blood type, tissue and antigens. He and their daughters weren't matches, so they had to find someone else to be Phyllis McCormack's donor.

Only one kidney is necessary in a transplant, and the kidney in the donor's body will grow larger and function for both kidneys. The kidney filters out fluids and waste that accumulate in the body.

The Final Donor

The McCormacks landed a spot on a Denver news station, and 174 people responded to their plea from the broadcast and their other efforts.

"We never, ever expected that many," Gary McCormack said.

Three potential donors were perfect matches, and one donor, who wants to remain anonymous, was nearly a perfect match and could have been Phyllis McCormack's sister, Gary McCormack said.

"She's a beautiful, loving woman," Phyllis McCormack said.

The transplant team asked the McCormacks to put together a program to help others find live donors, and the two are working out the details. They are connecting with the donors who wanted to help them to ask if they would consider donating to someone else.

Their program will include outreach, travel and education about the benefits of a live kidney and how to locate one.

"For years, I was silent about it," Phyllis McCormack said. "It's hard for me to say something was wrong and I needed help from someone else."

If interested in learning more about the McCormacks' work on finding live donors, call Gary McCormack at 667-7841.

"You need to be prepared to go to work," he said.

PKD Fundraising

From Plainsman, Huron, South Dakota, BY: SHILOH APPEL

Andy’s Road Race in honor of Harvey Gleich: Annual road race planned Saturday at Memorial Park

On Saturday, Aug. 30, Andy’s Road Race will take place in Huron with packet pick-up at the Memorial Park shelter and races beginning at 8 a.m. This year the race will honor the life of Harvey Gleich, who passed away in July. All funds raised from the race will go to the Polycystic Kidney Disease Foundation (PKD) to support others who are going through what Gleich went through.

“He was a kidney transplant patient because of the polycystic kidney disease,” said coordinator, Laurie Simons. “He had different health issues throughout his life. The reason why we decided to make the walk in his memory is because he had been a volunteer for Andy’s Race and so we wanted to do something in his memory and try and support [his] cause through the PKD foundation.”

By friends and family, Harvey Gleich was known for his healthy outlook on life and his emphasis on exercise, eating healthy and remembering to laugh, even during hard times.

“When he got sick with PKD he joined the Nordby center in 2005,” said Harvey’s wife, Peggy Gleich. “He continued to exercise and go there daily. So, I’m a nurse and I just got done with three days of 12-hour shifts and he would say, ‘You ready to go to the Nordby center?’ I would say,’Jeez, Harvey, I just got done with three 12’s in a row, my feet hurt, my body hurts. I’m so tired.’ He says, ‘You know what? I hurt a lot, too. But I get out of bed and I always feel better after we exercise.’”

Harvey would spend four hours in the gym each day, although a good percentage of that time was spent visiting with people there, according to his wife.

“He loved to talk,” said Peggy. “He was a very upbeat, positive guy. No matter what was handed out to him, he just took it in stride and he would just say, ‘Well, what do we have to do?’”

Harvey was diagnosed with PKD when he was 26 years old. He was told he could do nothing about it. He monitored his kidney functions and blood pressure and continued to exercise. He received a kidney transplant when he was in his 50s.

“It’s interesting that his doctor that diagnosed him was his doctor 30 years later doing the transplant. [Harvey] had the transplant in 2006 and he just couldn’t believe how much better he felt,” said Peggy. “He was so appreciative and he took good care of himself, eating right, exercising and everything.” [Read more]

From Borehamwood Times, United Kingdom, by Victoria Oliphant

Evening of comedy and magic to support kidney disease charity

An evening of comedy and magic will be held next month to raise money for a health chairty.

The Radlett Centre will host the evening in support of the polycystic kidney disease charity and is being organised by Joe and Melanie Arazi.

Only 30 tickets are left for the evening on September 21st, which features performances from Nick Einhorn and Ian Irving.

Tickets cost £25 and can be purchased by contacting joseph.arazi@sky.com.

From Western Telegraph, United Kingdom

Somerset cyclists raise cash for Kidney Research UK

Four charity cyclists are due to arrive in Tenby tomorrow (Sunday, August 23) at the end of a two-day ride in aid of Kidney Research UK.

Damien McCutcheon, aged 30, his 15-year-old brother-in-law, Connor Anstey; his father-in-law, Chris Anstey and his wife’s uncle, Jeremy Appleyard are planning to set off on their 180-mile ride from Radstock, Somerset on Saturday.

The Somerset riders have been inspired to raise money for the charity after the uncle of Damian’s wife and Connor was diagnosed with kidney disease in 2006, which led to kidney failure.

He was receiving dialysis four times a day until 2012, when he received a new kidney from one of his three sisters.

The gentleman, who has a holiday home in Tenby, had suffered from an aggressive form of IGA nephropathy, which affects the filters of the kidneys.

Said Damian: “There is currently no cure for IGA nepropathy or other forms of kidney disease - only life-extending treatments such as dialysis or a transplant, for which there is a huge shortage of donor organs.

“I decided, therefore, that I wanted to raise money for Kidney Research UK by taking on this cycling challenge in the hope that one day maybe a cure can be found.”

Donations to the riders can be made via www.justgiving.com.ride4kidneyuk.

21st Century Cures, Letters to Congress & Kidney Donation Economics

Seeking Action

From U.S. House of Representatives, Energy and Commerce Committee

Letters to Congress, Public Responses for 21st Century Cures

As the mother of a child suffering from PKD, a disease for which there is no cure, I urge you to seek a
path to a treatment. At present, she has kidney failure , dialysis and kidney transplant as her only hope for
survival. It is imperative that research be done to discover a viable alternative to transplantation.


As I understand, The House Energy and Commerce Committee has launched the 21st Century Cures initiative to draw attention to and close the glaring gap between the number of diseases and the number of treatments available. We would like to share our experience with you concerning Polycystic kidney disease. Our son, who is the light of our life, was adopted at the age of 4 mos. At age 23, he was diagnosed with
PKD. We have been devastated ever since. Our faith is what keeps us going. We pray daily for a cure.

As you may already know, Polycystic kidney disease (PKD) is a genetic disorder characterized by the growth of numerous cysts in the kidneys. The kidneys are two organs, each about the size of a fist, located in the upper part of a person's abdomen, toward the back. The kidneys filter wastes and extra fluid from the blood to form urine. They also regulate amounts of certain vital substances in the body. When cysts form in the kidneys, they are filled with fluid. PKD cysts can profoundly enlarge the kidneys while replacing much of the normal structure, resulting in reduced kidney function and leading to kidney failure.There is currently no treatment to slow or stop the growth of the kidney cysts that plague generations of families suffering from
polycystic kidney disease (PKD). PKD patients only remedies are dialysis and transplantation once their kidneys fail.

We implore you to help Congress move the ball forward and to give my son, and us, back our lives! We would be eternally grateful!


We need a cure or even a treatment for Polycystic Kidney Disease. (PKD).

I was diagnosed with PKD in June 1998. I was placed on a kidney transplant list in March 2011. I started dialysis in January 2013. I am 78 years old.

The cure is too late for me but I have three sons and one daughter with ages in their early 50s. All have polycystic kidney disease. They need the cure.

Dialysis keeps me alive but greatly limits travel and other activities. Dialysis and kidney transplant are costly primarily to the government. A cure or even treatments that slow disease progression would save a great deal of taxpayer and patient money. Patients could continue 100% productivity.

We need a cure for Polycystic Kidney Disease. (PKD).
[Read more]

Kidney Donation Economics

From Time Warner Cable News, Buffalo, NY, By: Katie Cummings

Man Donates Kidney to Wife, Calls for Legislation to Allow for Easier Transplants 

WEST SENECA, N.Y.--When Vincent Graber and his wife Michelle met 31 years ago, he knew she had a pre-existing condition that might some day require a kidney transplant.

"Of course I was hoping all along that the polycystic kidney disease would not be that bad with her and she would never need a kidney. But in the event she did need a kidney, it was always my hope that I would not only qualify but that I indeed would be the donor, because she means everything to me," said West Seneca resident Vincent Graber Jr.

But when that time came, Graber was rejected due to a blood pressure pill he was taking.

"I was actually rendered to tears in the office when they first told me that I would not qualify," said Graber,"I started on a very extensive exercise program. I started doing a lot of research to what are some of the things causing my high blood pressure."

He was rejected five times from donating. Finally he was able to help his wife, and they performed surgery on both of them June 26.

"Not only did I save my wife’s life, I’m sure I’ve extended my own life. So I was able to save two lives," said Graber.

The waiting list for people to receive a kidney could take years, according to the Northeast Kidney Foundation of Greater Buffalo.

"You’ve got two. God gave us two so we say share the spare. It’s such a wonderful thing to do for somebody because not only are you keeping them off dialysis, taking them off dialysis and even saving their lives," said foundation member Barbara Breckenridge

During his experience, Graber realized the process was not realistic for the working public.

"If you're the main bread winner for a family or the only bread winner for a family and you want to give your organ even to a friend, and then you find out the only thing you’re going to get is new York state disability, which is significantly lower than your full time pay and actually could receive no benefits," said Graber.

He's proposed an organ donor leave act to have employers compensate donors with wages and benefits. Vincent is waiting to hear back from state and congressional leaders. [Read more]

From The New York Times, Opinion: Alexander M. Capron, University Professor at the University of Southern California, was the director of ethics, trade, human rights and health law at the World Health Organization. Francis L. Delmonico, professor of surgery at the Harvard Medical School, is the immediate past president of The Transplantation Society.

Cover the Costs for Kidney Donors to Increase the Supply

Removing disincentives and obstacles to organ donation, rather than eliminating the federal ban on payment to donors, would be something the entire community could support.

First, to reduce the number of patients who die while waiting for a kidney transplant, the recipient’s insurance or Medicare should cover the costs that deter people from becoming donors. This would increase the supply of living kidney donors without creating a market for their organs.

These expenses include the costs of being evaluated as a potential donor, and of transportation, dependent care and lost wages during the period from predonation screening to postoperative recovery. Insurance against the risks of donation should also be provided. Medical complications may not be covered by each donor's health insurance. The death of a donor without life insurance would be a disaster for a family that has lost its source of financial support.

This cost coverage would ultimately reduce the cost to health insurance companies and the federal government because enabling patients to undergo kidney transplantation would not only extend and improve their lives but also save the cost of dialysis.

A second change would be to remove the three-year limitation on Medicare coverage of the immunosuppressive medications that are essential to prevent organ rejection. That shortsighted policy results in hundreds of patients losing their transplanted kidneys every year, forcing them to return to dialysis while they await another transplant.

A third step would be to increase the supply of organs from deceased donors by efficiently using donor consent registries throughout the country, and by recovering and transplanting more kidneys from donors after circulatory death. Additionally, about 500 kidneys are recovered from deceased donors each year in the United States and discarded even though they are medically suitable for transplantation.

Three decades of experience around the world has shown that if human organs become commodities they will always be obtained from the poorest and most vulnerable in society. The consequences of such a market-driven program are now being rejected even by colleagues in Iran, which up to now has been the only country that enabled organ sales.

Rather than proposing plans for buying kidneys, let's use our collective ingenuity to devise policies that respect voluntary living donors and the families of deceased donors for their generous solidarity with patients in need.

PKD Research

From Renal and Urology News, by Jody A. Charnow, Editor
Kidney Failure From Polycystic Disease Linked to Better Outcomes

Patients with end-stage renal disease (ESRD) due to autosomal dominant polycystic kidney disease (ADPKD) are more likely than patients with ESRD from other causes to be wait-listed for and to undergo renal transplantation, according to a new study. They also are less likely to die.

Investigators with the U.S. Renal Data System (USRDS), Minneapolis Medical Research Foundation, led by Robert N. Foley, MB, retrospectively analyzed USRDS data from 1,069,343 patients who initiated renal replacement therapy (RRT) from 2001 through 2010. Of these, 23,772 patients had ADPKD as the primary cause of their ESRD and 1,045,571 had a non-ADPKD cause of ESRD. Patients with and without ADPKD were matched according to age, sex, race, and ethnicity to compare clinical outcomes.

During 4.9 years of follow-up, the incidence rate for being listed for kidney transplantation was significantly higher for the ADPKD than the non-ADPKD group (11.7 vs. 8.4 per 100 person-years), as was the incidence rate for receiving a transplant (9.8 vs. 4.8 per 100 person-years), Dr. Foley and colleagues reported online ahead of print in the American Journal of Kidney Diseases. The incidence rate for death was significantly lower for the ADPKD patients (5.6 vs. 15.5 per 100 person-years).

The study also showed that 48% of the ADPKD patients received more than 12 months of nephrology care prior to RRT. “Considering that that ADPKD is a kidney disease for which early detection and access to specialized care should exceed most other types of kidney disease, it was disappointing that less than half the study population had received more than a year of nephrology care before initiating RRT,” the authors wrote.

The investigators observed that ADPKD differs from most other causes of ESRD because it can be detected early in life. “Hence, it has the potential to illuminate issues such as non–disease-specific interventions to prevent ESRD and patterns of nephrology care in late-stage chronic kidney disease.”

Kidney Disease

From Enid News, Enid, Oklahoma, by Judy Rupp

Kidney disease is on the rise

An increasing number of Americans, including children and adolescents, are overweight or obese. And obesity has been linked to an increased risk of kidney disease. Diabetes, another risk factor for kidney disease, is also increasing. Finally, the serious effects of kidney disease are more likely to occur with advancing age. And the percentage of older Americans in the population is also increasing.

Chronic kidney disease (CKD) usually develops gradually over a number of years, and the symptoms may go unnoticed until the final stages. But when kidney failure strikes, there is no going back. Without dialysis or a kidney transplant, the patient will likely die.


The kidneys have the task of removing waste and excess fluids from the blood; maintaining a proper balance of salt, potassium and other minerals; and regulating blood pressure. They also produce erythropoietin, which stimulates the production of red blood cells and an active form of vitamin D that is necessary for healthy bones.

Acute or sudden damage to the kidneys can occur because of a traumatic injury, a severe infection, damage from certain drugs or toxins, complications of pregnancy or severe dehydration such as that sometimes suffered by marathon runners. Although they can be serious, these short-term problems are usually detected early enough for successful treatment.

Chronic kidney disease, by definition, lasts longer than three months and can be more dangerous because symptoms may not occur or be noticed until irreparable damage has occurred.

More than 60 percent of CKD cases are caused by diabetes (both types 1 and 2) and/or high blood pressure. The tiny blood vessels in the kidneys become damaged by excess blood sugar or by the extra pressure of poorly controlled blood pressure.

Other causes of CKD include glomerulonephritis (an inflammation of the filtering system of the kidneys), urinary tract infections; kidney stones; an enlarged prostate gland, congenital defects, polycystic kidney disease and disorders such as lupus that affect the immune system. Overuse or misuse of NSAIDs such as ibuprofen or naproxen can lead to chronic kidney disease.

Symptoms include swollen feet or ankles caused by excess fluid; puffiness around the eyes; dry, itchy skin and a need to urinate more frequently, particularly at night.

One way to know about the health of your kidneys is to keep an eye on your blood pressure. Not only is hypertension a major cause of kidney disease, it is also an effect. When the kidneys are not filtering properly, blood doesn’t flow freely through the tiny blood vessels, and the result is elevated blood pressure. [Read more]

Kidney Disease Epidemic

Kidney Disease

NewsMax Health, by Rick Ansorge

Kidney Disease Epidemic: 60 Percent in US Will Fall Victim

We usually don’t give much thought to our kidneys. Most of us take it for granted that the body’s filters will continue to function as efficiently as the paper filters in our coffeemakers.

Yet, kidney disease is the nation’s eighth-leading causing of death. And it can sneak up on you before you even realize you have it.

“Kidney disease tends to be a silent disease until it’s very advanced,” says Beth Piraino, M.D., president of the National Kidney Foundation. “It’s very much associated with an increased risk of dying, particularly from a cardiovascular cause.”

You are more than likely to get kidney disease at some point, since lifetime risk is 60 percent. And once you get it, treatment options are often limited to dialysis, which requires regular mechanical filtering of the waste products in your blood, or a kidney transplant. There is a long waiting list for organ transplants.

Alert: Doctor Reveals: Why You’re So Tired


“You can be walking around and think you’re just perfectly fine, but you could have advanced kidney disease and not know it,” Dr. Piraino tells Newsmax Health.

“Then all of a sudden somebody can say that you need to go on dialysis, which can be a bit of a shock.”

Even less-severe forms of kidney disease can lead to bone disorders, anemia, and a reduced quality of life.

Although kidney disease receives little publicity compared to other major killers, experts describe it as an “exploding” epidemic.

“Most kidney disease comes from high blood pressure and diabetes,” says Dr. Piraino. “Because so many people are overweight, obese, and even morbidly obese in the United States, we have a lot more of these problems. So we’re getting more kidney disease.”

Experts agree that the toll of kidney disease can be drastically reduced with early detection.

That’s why the National Kidney Foundation has issued a new recommendation that all Americans ages 60 and older — not just those with diabetes or hypertension — undergo annual screenings that can identify kidney disease, including early-stage disease that may be reversible.

The screening is a simple blood test that is used to estimate your “glomerular filtration rate” — or GFR. A rate of less than 60 milliliters per minute may indicate kidney disease.

In general, African-Americans have the highest risk of kidney disease, possibly because they often carry a gene that was protective against sleeping sickness in Africa but now is associated with kidney disease in North America.

If the blood test shows a low GFR, a urine test can be given to check for leakage of albumin, a protein that ordinarily does not pass through the kidneys. A measurement of at least 30 milligrams of albumin per gram may indicate kidney disease.

Alert: Doctor Reveals: Why You’re So Tired


High levels of albumin – a sign of a condition called proteinuria -- are also associated with cardiovascular disease and a more rapid progression of kidney disease. [Read more]

From CBS News, By DENNIS THOMPSON

"Southern fried" diet may cause kidney damage

The types of food that many Southerners seem to prefer -- fried foods, sweet drinks and processed meals -- may be deadly for people with kidney disease, a new study suggests.

A "Southern-style" diet was associated with a 50 percent greater risk of death over a 6-year period for people with kidney disease, researchers found.

The researchers believe the death risk increases because kidney patients have an impaired ability to filter out the harmful fats, sugars and minerals contained in a typical Southern diet.

"People who have kidney disease have a harder time getting rid of a lot of the substances in these types of food that are bad for you," said study lead author Dr. Orlando Gutierrez, a kidney expert at the University of Alabama School of Medicine.

By the same token, a diet high in fruits and vegetables appears to reduce the risk of death by nearly a quarter in kidney patients, according to the study published online this month in the American Journal of Kidney Diseases.

It should be noted, however, that the study was only able to show an association between diet and the risk of death in people with kidney disease. It wasn't designed to prove that dietary factors directly caused a higher or lower risk of death.

This is the first study to identify a regionally specific diet pattern that seems to be damaging to people suffering kidney disease, Gutierrez said.

"It's well known that the Southern region has poor health outcomes in a number of different areas including stroke, heart disease and sepsis, and that the style of diet plays a role," he said.

Gutierrez and his team approached their research with the aim of looking at dietary patterns, rather than specific foods or nutrients.

"We looked to see whether certain patterns of eating correlated with increased risk of death among kidney patients," he said. "We wanted to put the spotlight on what people are actually eating, rather than salt intake or fat intake."

The researchers identified nearly 4,000 people with chronic kidney disease who had not started dialysis, and analyzed the way those folks regularly ate.

The researchers found that those who primarily ate processed and fried foods, organ meats and sweetened beverages -- all items popular in Southern diets -- had slightly more than a 50 percent increase in their risk of death during the approximately 6-year follow-up period.

The Southern diet is rich in nutrients that aren't recommended for kidney patients, Gutierrez said. For example, processed foods tend to contain lots of salt and phosphorus, which kidney patients have a hard time filtering from their bloodstream and can lead to high blood pressure and heart disease.

The same goes for the sugar loaded into sweet tea and soft drinks, which increases risk of diabetes, and the heavy doses of fats contained in fried foods.

These harmful substances may be why the southern region got its less-than-flattering nickname -- the "Stroke Belt," said Thomas Manley, director of scientific activities for the National Kidney Foundation.

"The vast majority of death from kidney disease is related to heart disease," Manley said. "If you develop kidney disease, you're much more likely to die from heart disease -- heart attacks, heart failure, stroke -- than someone who doesn't have kidney disease."

Because kidney patients who ate a plant-based diet appeared to have an improved survival rate, it stands to reason that changing your diet might help even if you already have kidney disease, Gutierrez said. [Read more]

PKD Foundation

From PKD Foundation

PKD Foundation on LinkedIn

The PKD Foundation is a not-for-profit organization dedicated to finding treatments and a cure for polycystic kidney disease (PKD). We do this through promoting research, education, advocacy and awareness. Our goal is that one day no one will suffer the full effects of PKD.

Since 1982, more than $31 million has been invested in more than 550 research, clinical and scientific grants, fellowships, scientific meetings and education programs. This makes the Foundation the second largest funder of PKD research after the National Institutes of Health (NIH).

In 2010, the PKD Foundation launched the integrated research initiative Accelerating Treatments to Patients (ATP), which is designed to speed up development of treatments which could slow or stop progression of PKD. Key components of this initiative include drug repurposing, targeted research grants, tissue donation, clinical trials and much more.

In addition to funding research and educational programs, the PKD Foundation has more than 60 volunteer-led local Chapters across the country. The local chapters are the backbone of the PKD community, helping the Foundation raise funds for PKD research and increase PKD awareness.

The PKD Foundation founded by Joseph H. Bruening and Jared J. Grantham, MD, and is headquartered in Kansas City, MO.

Kidney Dialysis

From BusinessWorld, by P B Jayakumar, India

Kidney Care Comes Of Age

Kamal D. Shah, a chemical engineer and a former employee of Apple, was living a life of bliss until bad news came calling. To be precise, it was not a single piece of news but a series of events that unfolded, starting 1997. It began with his kidneys, with both showing signs of damage. He was put on hemodialysis for a year and a half. His mother gave him a kidney, but the transplant wasn’t successful. A few years later, Shah was caught in the dreaded December 2004 tsunami while holidaying in Mahabalipuram with friends. Though he escaped, the incident took a toll on his body, causing severe kidney infection and resultant complications. Since then, Shah has been on daily dialysis at home.

But unlike most patients with a similar condition, Shah did not retire from an active life and went on to set up a dialysis care chain — Hyderabad-based NephroPlus — with Vikram Vuppala, a healthcare strategy consultant with McKinsey in the US. Later, Sandeep Gudibanda, an engineer-turned-entrepreneur, joined them.

Even as data indicates an acute shortage of medical infrastructure for dialysis and renal care, a new business segment is shaping up in India’s healthcare sector. In the past three to four years, several chains have come up offering quality dialysis facilities and related services. There are currently three or four such organised chains, while more are waiting in the wings with various business models.

There is little doubt that the potential for an organised renal care market is immense. There are millions of people in the country whose lives depend on dialysis. In fact, so serious is the current state of affairs that the Supreme Court, on 26 November 2014, sought a response from the central and state governments on the status of dialysis and renal care infrastructure in the country. The court’s action came in response to a public interest litigation (PIL) filed by advocate Sanjeeb Panigrahi.

A Crying Need
“The size of the dialysis market in India is about $350 million and is growing at 20-25 per cent annually. Unfortunately, about 3.5 lakh people in India reach the end stage of kidney disease every year,” says Shriram Vijayakumar, founder and chief executive of Bangalore-based DaVita NephroLife, which has already set up 14 centres. - [Read more]

PKD Awareness & Fundraising

From Broadway World

Remy Zaken, Ali Ewoldt & More Set for Broadway Sings for PKD at Joe's Pub, 8/15

The fourth annual Broadway Sings for PKD, a concert benefiting the Polycystic Kidney Disease Foundation, will be offered Friday, August 15th at 9:30 pm at Joe's Pub.

The concert will feature new musical theatre songs by emerging writers, including Hali Alspach, Will Aronson, James K. Ballard, Christina Capatides, Ty Defoe, Benny Gammerman, Emily Goldman, Sarah Hammond, Edison Hong, Bob Kelly, Rachel Kunstadt, Ariel Mitchell, Carlos Murillo, Bill Nelson, Tidtaya Sinutoke, and Paulo K. Tirol.

Performers will include Ali Ewoldt, Andrew Boetcher, Sam Heldt, Beth Kirkpatrick, Patty Nieman, Emily Skeggs, Jason Sweettooth Williams, Remy Zaken, and more. Joanna Parson hosts.

Broadway Sings for PKD is produced by Rachel Kunstadt and Quintessence of Dust Productions, directed by Daniella Caggiano, and music directed by Will Buck.

Proceeds from the evening will go to the Polycystic Kidney Disease Foundation, which "promotes programs of research, advocacy, education, support and awareness in order to discover treatments and a cure for Polycystic Kidney Disease and improve the lives of all it affects."

Tickets are $15 in advance and $20 at the door. There is a $12 food or two-drink minimum. Tickets are available online at www.joespub.com, by phone at (212) 967-7555 or in person at The Public Theater Box Office (425 Lafayette Street).

From The Portsmouth News, United Kingdom

Curtis Pitter tackles mountain trek to raise money

WHEN Curtis Pitter was diagnosed with kidney disease, his dream of becoming a pilot came to an end.

But the 21-year-old was determined to remain positive and decided to climb the highest mountain in Britain in a bid to raise money for the Polycystic Kidney Disease Charity.

Curtis was recently diagnosed with the illness which causes cysts to form in the kidney and can lead to renal failure. But rather than let it beat him, he wanted to do something to raise money for the charity which has helped him.

So he decided to climb Ben Nevis in Scotland.

He said: ‘A very good friend of mine and I had talked about climbing Ben Nevis for ages.

‘We started making plans well over a year ago now and finally, this year we found the time to be able to do it.’

Curtis discovered the diagnosis when he went for his medical to become a pilot for the RAF.

After passing the aptitude tests and the interview, he was called for a medical.

It was during this that he was diagnosed with polycystic kidney disease and was forced to terminate his application.

He now works in the video editing and quality control department of Douglas Stafford, based at 1000 Lakeside, in North Harbour, Cosham.

Curtis added: ‘My family have a history of polycystic kidney disease.

‘My father was lucky enough to receive a kidney donation from my mother eight years ago.

‘Thanks to her, he is fit and well. So I was really keen to do something for a charity that had helped my family.’

Curtis trained hard to prepare himself for the climb and despite being a keen rower for BTC ARC in Southampton, he admitted training had been tough with a combination of running, rowing, swimming and cycling.

He and his friend Jared Ares Brutal completed the climb of the 1,344-metre mountain last week. So far, the pair have raised just over £2,000.

To make a donation to Curtis and Jared, visit justgiving.com/curtis-pitter.

Kids With PKD

From Pediatrics, The Official Journal of the American Academy of Pediatrics

Autosomal Recessive Polycystic Kidney Disease: A Hepatorenal Fibrocystic Disorder With Pleiotropic Effects

State-of-the-Art Review Article
Erum A. Hartung, MDa and
Lisa M. Guay-Woodford, MDb


ABSTRACT

Autosomal recessive polycystic kidney disease (ARPKD) is an important cause of chronic kidney disease in children. The care of ARPKD patients has traditionally been the realm of pediatric nephrologists; however, the disease has multisystem effects, and a comprehensive care strategy often requires a multidisciplinary team. Most notably, ARPKD patients have congenital hepatic fibrosis, which can lead to portal hypertension, requiring close follow-up by pediatric gastroenterologists. In severely affected infants, the diagnosis is often first suspected by obstetricians detecting enlarged, echogenic kidneys and oligohydramnios on prenatal ultrasounds. Neonatologists are central to the care of these infants, who may have respiratory compromise due to pulmonary hypoplasia and massively enlarged kidneys. Surgical considerations can include the possibility of nephrectomy to relieve mass effect, placement of dialysis access, and kidney and/or liver transplantation. Families of patients with ARPKD also face decisions regarding genetic testing of affected children, testing of asymptomatic siblings, or consideration of preimplantation genetic diagnosis for future pregnancies. They may therefore interface with genetic counselors, geneticists, and reproductive endocrinologists. Children with ARPKD may also be at risk for neurocognitive dysfunction and may require neuropsychological referral. The care of patients and families affected by ARPKD is therefore a multidisciplinary effort, and the general pediatrician can play a central role in this complex web of care. In this review, we outline the spectrum of clinical manifestations of ARPKD and review genetics of the disease, clinical and genetic diagnosis, perinatal management, management of organ-specific complications, and future directions for disease monitoring and potential therapies.