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
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]
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]
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.
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
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
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.
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]
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