From WCVB.com, abc Affiliate, Boston, MA
Boston Walk for PKD 2014
We Need You To Walk in 2014 — Unite to Fight PKD
Polycystic (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 . Funds raised from Walks across the country make up nearly one third of our . This year, Join WCVB Newscenter 5's Kathy Curran on Saturday September 20, 2014 at DCR Artesani Park.
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 where no one suffers the full effects of PKD. Learn more about PKD and why we're walking for a cure.
Register for the Boston walk here.
From Vauxhall Advance, Vauxhall, Alberta, Canada
Clemis clan raising awareness
A team of Taberites is back raising funds for kidney research in support of the upcoming Kidney March in September.
Participating as part of team “Nephron Fabulous” in 2014 will be Jan Clemis, Robin Pickerell, Carli Bekkering, and Blair Clemis. Spanning Sept. 5-7, the event sees marchers trek 100 kilometres from Kananaskis Country to Calgary.
Polycystic (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 . Funds raised from Walks across the country make up nearly one third of our . This year, Join WCVB Newscenter 5's Kathy Curran on Saturday September 20, 2014 at DCR Artesani Park.
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 where no one suffers the full effects of PKD. Learn more about PKD and why we're walking for a cure.
Register for the Boston walk here.
From Vauxhall Advance, Vauxhall, Alberta, Canada
Clemis clan raising awareness
A team of Taberites is back raising funds for kidney research in support of the upcoming Kidney March in September.
Participating as part of team “Nephron Fabulous” in 2014 will be Jan Clemis, Robin Pickerell, Carli Bekkering, and Blair Clemis. Spanning Sept. 5-7, the event sees marchers trek 100 kilometres from Kananaskis Country to Calgary.
“They’ve all done it before. The first year, which was 2010, we had a team of eight,” said marcher Jan Clemis. “It was a little bit bigger and broader with eight of us. That was the inaugural year. They hold it kind of always in the same place — they had to change it last year because of the floods — but we start at Millarville Race Track, we walk through Kananaskis Country, and then we finish the third day at Canada Olympic Park.”
Clemis, who suffers from kidney disease herself, along with members of her family, has participated in the Kidney March since its inception.
“We march into the park, and then we come down, and everyone accumulates at the very top, and then we all come down as a group. And then we get to meet our families, and have some closing ceremonies. It’s pretty emotional, everyone has done this ardous journey together, and you get to meet so many people that are well connected with that common thread. Everyone has their own story.”
Not exactly a “walk in the park”, the Kidney March sees marchers put in some fairly ardous days to reach their destination on time.
“The first two days are the long days. We do 38 kilometres, and 37 kilometres, and then the last day is the short day, we just do 25 kilometres,” said Clemis.
Many members of Clemis' family have polycystic kidney disease, a condition passed on genetically that sees cysts develop from the nephrons (filtering units) of the kidneys, which enlarges them and eventually prevents the proper filtration of blood.
“We’ve always been connected, because we have a genetic kidney disease within our family. Both of my daughters have it, I got it from my dad, who got it from his mom. I have a sister and nephew, and aunt and uncle, and some cousins with PKD. So it’s really close to our heart.”
Clemis is also a firm supporter of organ donation of any kind, not just for sufferers of kidney disease, but for all afflictions.
“One of the main reasons why we march is for research into all various kidney diseases, but another important part of why we do the Kidney March is to promote organ donation,” said Clemis.
Fundraising for the team is already well underway, with a target figure set for each marcher participating of $2,200. The team is hoping to raise $8,000 in total. [Read more]
Singing for PKD
From Public Theater, New York, NY
Broadway Sings for PKD
August 15, 2014, Tickets $15.00
With the prompt "ask big questions", emerging musical theatre writers showcase new songs, to be interpreted by Broadway performers in the 4th annual Broadway Sings for PKD, raising awareness of Polycystic Kidney Disease. All proceeds benefit the Polycystic Kidney Disease Foundation.
Living With PKD
From Leader-Telegram, Eau Claire, Wisconsin, By Emily Miels Leader-Telegram staff
Six years later, the Eau Claire couple aren’t letting the transplant slow them down. The McDonalds returned from the Transplant Games of America earlier this month, where they competed in athletics alongside other transplant recipients, donors and donor families.
The Transplant Games of America, which took place July 11-15 in Houston, Texas, is a biennial event that attracted thousands of people from throughout the U.S. The games are a tribute to what the McDonalds, and others with similar experiences, endured and have since accomplished.
“It’s very humbling,” Jim McDonald, 58, said.
The McDonalds competed alongside about 60 others on Team Wisconsin. Etta McDonald, 55, swam, and her husband participated on the group basketball team.
Josh Bergeron, a 29-year-old Eau Claire resident who had a heart transplant 15 years ago, also attended the games with Team Wisconsin. He said the event really isn’t about winning but rather supporting each other and having fun.
“Nobody really cares if they get any medals,” Bergeron said. “If you get some, it’s cool, but there’s not people at each other’s throats or anything.”
The competition includes such events as trivia, darts and poker for those who aren’t able to compete in the more physical activities.
“It’s really like they just want everybody to participate,” Bergeron said.
‘Not alone’ [Read more]
Kidney Treatment Choices
From Cleveland Clinic, Cleveland, Ohio
Whether it’s a heart, lung, kidney or liver, many people assume that transplantation is a last resort in treating a failing organ.
But in the case of kidney disease, transplantation is actually the first line of treatment for patients who are candidates to receive a new kidney.
“A kidney transplant is not a last resort; it’s a first resort,” says nephrologist Emilio Poggio, MD, an expert in kidney transplantation. “For people who meet the requirements for kidney transplantation, it’s the best option for treatment.”
But the scarcity of kidneys for transplantation makes the alternatives — hemodialysis and peritonealdialysis — much more common.
Dialysis vs. kidney transplant
Dialysis artificially does what healthy kidneys do. It pumps blood out of your body, cleans it and returns it to your body. Treatments are usually for three or four hours, three times a week.
“Transplantation is the way to go, and the sooner the better,” says nephrologist Robert Heyka, MD, Chair of Nephrology in the Department of Hypertension and Nephrology. “But the reality is most people will still need to be on dialysis.”
According to the Centers for Disease Control and Prevention, more than 10 percent of American adults – about 20 million people — have chronic kidney disease. Dr. Poggio says 600,000 are on dialysis and 100,000 are on the waiting list for a kidney transplant. Yet only 16,000 transplants are done each year.
What you need to know
Experts say you should know these four facts:
1. Dialysis has both positives and negatives. Some of Dr. Heyka’s patients put off going on dialysis, but when they try it, they may find themselves pleasantly surprised.
“People often say that they didn’t realize how bad they’d been feeling until they got treatment,” he says. “Within the first few months, their appetite is back, they’re gaining weight and they have more energy.”
But the time commitment of dialysis treatments can limit a person’s independence and quality of life.
2. Benefits of transplant outweigh the side effects. “There’s plenty of data that, despite the negatives of transplantation, the short-term and long-term outcomes are much better than those on dialysis,” says Dr. Poggio. “Their quality of life improves, they live better and longer.”
In fact, a landmark 1999 study compared the health outcomes of patients on dialysis waiting for a transplant to those who had already received a new kidney. The study found the long-term mortality rate of transplant recipients was 48 to 82 percent lower than for those on dialysis.
Of the 16,000 kidney transplants conducted in the U.S. every year, 30 to 40 percent come from living donors. Those transplants have greater success than transplants from cadavers.
3. Not everyone can receive a transplant. Dr. Poggio considers many factors in deciding who is a candidate for a new kidney, including other medical conditions like diabetes and heart failure. But there are ways you can improve your candidacy.
“Stay healthy and active,” he says. “Manage your conditions that might complicate a transplant — like smoking — and remain compliant with your medical therapies.”
4. Choose your care wisely. Living well on dialysis depends on choosing the right location for your care. Social workers should provide support. Good communication among your healthcare providers is a key factor. And a positive atmosphere with social interaction among patients is also important.
“Don’t be afraid to ask, ‘How often will I see my doctor? What are your rates for hospitalization? Will I see a nurse practitioner?’” says Dr. Heyka. “If you are in the right unit, you’ll get lots of support.”
If you have kidney disease and currently on dialysis, don’t hesitate to talk to your doctor about a kidney transplant. Depending upon your individual situation, it could offer many benefits. [Read more]
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