Sunday, August 28, 2016

PKD and Cancer Risks, Iran: Unique Kidney Donor System, PKD Fundraising: Saddlebrook, Pembroke, Maidenhead

PKD Cancer Risks

From New England Journal of Medicine, By Amy Orciari Herman

Polycystic Kidney Disease Tied to Increased Risk for Kidney, Gastric Cancers

Adults with polycystic kidneys may have increased risk for multiple cancers, regardless of kidney function, suggests a Lancet Oncology study.

Using a Taiwanese health insurance database, researchers matched over 4300 adults with polycystic kidney disease to 4300 controls without it. Adults with histories of cancer, chronic kidney disease, or end-stage renal disease were excluded.

During roughly 4–5 years' follow-up, the incidence of any cancer was 20 per 1000 person-years among those with polycystic kidneys versus 11 per 1000 among controls. After full multivariable adjustment, risks were significantly increased for cancers of the kidneys (hazard ratio, 2.5), colon (HR, 1.6), and liver (HR, 1.5).

Commentators say that “knowledge of the potential that there might be an excess cancer risk in early polycystic kidney disease should be widely known.” However, “there is insufficient evidence ... to embark on kidney, liver, and bowel screening programmes for patients with polycystic kidney disease, other than those already used in the general population.” [Read more]



Kidney Donation Debate

From MedicalXpress

In Iran, unique system allows payments for kidney donors

In Iran, unique system allows payments for kidney donors

In this July 2, 2016 photo, doctors perform a kidney transplant at Modarres Hospital in Tehran, Iran. In Iran, a unique system allows those in need of a transplant to buy a kidney. The program, which has seen Iran's waitlist for kidneys …more


The whirling hum of a dialysis machine could have been the soundtrack to the rest of Zahra Hajikarimi's life but for an unusual program in Iran that allows people to buy a kidney from a living donor.

Iran's kidney program stands apart from other organ donation systems around the world by openly allowing payments, typically of several thousand dollars. It has helped effectively eliminate the country's kidney transplant waiting list since 1999, the government says, in contrast to Western nations like the United States, where tens of thousands hope for an organ and thousands die waiting each year.

Critics warn the system can prey on the poor in Iran's long-sanctioned economy, with ads promising cash for kidneys. The World Health Organization and other groups oppose "commercializing" organ transplants. Some argue such a paid system in the U.S. or elsewhere could put those who cannot afford to pay at a disadvantage in securing a kidney if they need one.

But as black-market organ sales continue in countries like India, the Philippines and Pakistan and many die each year waiting for kidneys, some doctors and other experts have urged America and other nations to consider adopting aspects of Iran's system to save lives.

"Some donors have financial motivations. We can't say they don't. If (those donors) didn't have financial motives, they wouldn't ... donate a kidney," Hashem Ghasemi, the head of the patient-run Dialysis and Transplant Patients Association of Iran, told The Associated Press. "And some people just have charitable motivations."

The AP gained rare access to Iran's program, visiting patients on dialysis waiting for an organ, speaking to a man preparing to sell one of his kidneys and watching surgeons in Tehran perform a transplant. All of those interviewed stressed the altruistic nature of the program—even as graffiti scrawled on walls and trees near hospitals in Iran's capital advertised people offering to sell a kidney for cash.

As far as organ donations go, kidneys are unique. While people are born with two, most can live a full, healthy life with just one filtering waste from their blood. And although a donor and recipient must have a compatible blood type, transplants from unrelated donors are as successful as those from a close relative. In addition, kidneys from a living donor have a significantly better long-term survival rate than those from a deceased donor.

Iran started kidney transplants in 1967 but surgeries slowed after the 1979 Islamic Revolution and the storming of the U.S. Embassy in Tehran, in part due to sanctions. Iran allowed patients to travel abroad through much of the 1980s for transplants—including to America. But high costs, an ever-growing waiting list of patients and Iran's grinding eight-year war with Iraq forced the country to abandon the travel-abroad program.

In 1988, Iran created the program it has today. A person needing a kidney is referred to the Dialysis and Transplant Patients Association, which matches those needing a kidney with a potential healthy adult donor. The government pays for the surgeries, while the donor gets health coverage for at least a year and reduced rates on health insurance for years after that from government hospitals.

Those who broker the connection receive no payment. They help negotiate whatever financial compensation the donor receives, usually the equivalent of $4,500. They also help determine when Iranian charities or wealthy individuals cover the costs for those who cannot afford to pay for a kidney.

Today, more than 1,480 people receive a kidney transplant from a living donor in Iran each year, about 55 percent of the total of 2,700 transplants annually, according to government figures. Some 25,000 people undergo dialysis each year, but most don't seek transplants because they suffer other major health problems or are too old.

Some 8 to 10 percent of those who do apply are rejected due to poor health and other concerns. The average survival rate of those receiving a new kidney is between seven to 10 years, though some live longer, according to Iranian reports.

In the United States, about a third of kidney donations come from living donors. The average kidney from a deceased donor lasts 10 years, while one from a living donor averages about 15 years, according to Dr. David Klassen of the United Network for Organ Sharing, or UNOS, which oversees the U.S. transplant system. Recipients of living-donor kidneys in the U.S. fare better in part because they haven't been on dialysis as long before their transplant. [Read more]




PKD Fundraising

From Saddlebrook- Elmwood Park Daily Voice, NJ, by Anthony Locicero

Grandmother's Struggle Inspires Saddle Brook Man To Raise Money, Awareness

TJ Sullivan raised $2,000 for the PKD Foundation and Theresa LaBarck Donation Fund last year.

TJ Sullivan of Saddle Brook watched his grandma deal with her illness and decided to conduct some research.

Twenty-five years ago, Theresa LaBarck – or "mom-mom" as Sullivan calls her – was diagnosed with Polycystic Kidney Disease

"PKD is one of the world's most common inherited disorders in which clusters of cysts develop primarily on or around the kidneys," Sullivan said. "This can lead to other medical issues, such as aneurysms, high blood pressure and kidney failure. Mom-mom is one of the strongest women I know, and continuously battles PKD with a determination to overcome it."

Sullivan started researching the disease two years ago and had a fundraiser in Ridgefield Park to benefit both the PKD Foundation and Theresa LaBarck Donation Fund .

"Giving back means the world to me," said Sullivan, who donated $1,000 to both organizations. "Feeling like you are making a difference with whatever charity you are passionate about creates a lot of positive energy inside. I've been so incredibly passionate about the PKD Foundation because its mission to find treatments and/or a cure for this incurable disease hits so close to home."

Sullivan is planning a second even, " Winter Wonderland , " from 5-10 p.m. Dec. 10 at Ridgefield Park's Knights of Columbus.

"The goal is to raise even more awareness for Polycystic Kidney Disease and the PKD Foundation," said Sullivan, who works part-time at his family's Ridgefield Park deli. "Money isn't always everything; sometimes word of mouth does more good. As I get deeper into my fundraising efforts, I meet even more incredible people that are somehow affected by PKD."

Ridgefield Park Mayor George Fosdick will serve as one of the keynote speakers.

Joe Kenney, Marty Rotella and the Sandy Stones Trio will perform.

A spaghetti and meatball dinner will be served.

Sullivan, a 2014 Saddle Brook High School graduate, previously volunteered at St. Jude Children's Research Hospital events and raised money for St. Philip The Apostle Church .



From The Daily Observer, Pembroke, Canada

Fighting kidney disease one step at a time

Heather Sutherland, left, helps lead the 2015 edition of the annual Kidney Walk in Pembroke out of the marina towards Pembroke's downtown core.


The Kidney Foundation of Canada is urging Ontarians to lace up their sneakers and help move research forward for Canadians living with kidney disease.

The annual Kidney Walk event brings thousands of participants out in support of people living with kidney disease and their families. Nearly 10,000 Ontarians depend on life-sustaining dialysis treatments several times a week, over 1,000 are waiting for a kidney transplant, and countless others live with reduced kidney function that may have gone undetected. Across the country, millions are at risk of developing kidney disease.

Forty communities across Ontario will hold walks this fall in support of the 1 in 10 Canadians with kidney disease and The Kidney Foundation of Canada. One of those walks takes place here in Pembroke. For 2016, the walk is scheduled to take place on Sunday, Sept. 17 based out of the Pembroke marina. Registration will take place at 10 a.m. with the walk actually starting at 11 a.m.

The Sutherland family of Pembroke (Don, Cathy, Colleen, Meghan and Heather), has been hosting fundraisers for the Kidney Foundation since Don was diagnosed with polycystic kidney disease and received a transplant after a live donation from his wife, Cathy, in 2008. In addition to organizing the annual walk, the family also hosts an early summer ball tournament which is traditionally the first event of the year in support of the Pembroke Kidney Walk.

Every step you take on your Kidney Walk journey will provide hope for those living with kidney disease when they need it most. A diagnosis of kidney disease is life changing and impacts the entire family. For some, it means losing hours of the week to dialysis, impacting their opportunities to work, spend time together and travel.

That's why teams of friends and families will join together to walk to support their loved ones.

Create a team and join together at a Kidney Walk near you to help make a difference. It only requires a little time and effort, but each step will provide hope to many. Registration is easy online at www.kidneywalk.ca.

The Kidney Foundation of Canada works to improve the lives of all people affected by kidney disease through research, government advocacy, peer support, education and programs.

Join the kidney community at Kidney Walk and help create a future without kidney disease.

For more information, please visit www.kidneywalk.ca or call Bruce Hill at 613-724-9953 / 1-800-724-9953 ext.4560 email at bhill@kidney.on.ca.



From Maidenhead Advertiser, England, by Grace Witherden

Lido swimmer takes on mammoth challenge for charity

Lido swimmer takes on mammoth challenge for charity


A 36-year-old who took on a mammoth swimming challenge has managed to raise more than £2,300 for the Polycystic Kidney Disease charity.

Jenny Max, who grew up in Holyport, decided to swim in ten lidos across London in one day to raise awareness for polycystic kidney disease (PKD).

She swam in all ten lidos on Saturday, July 23 and is now planning her next challenge.

The cause is close to her heart as Jenny, along with her mother, brother and sister all suffer from the genetically inherited disease.

The disease causes cysts to grow in the kidneys which reduce their function and can lead to kidney failure.

The former Winbury School pupil said: “Outdoor swimming is my passion and I wanted to do something for a good cause.

“It’s amazing how much has been raised. I had a friend who transported me around London on a motorbike all day and ended up joining in as well.”

Visit www.justgiving.com/fundraising/jenny-max to donate.

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