From The Press, York, United Kingdom, by Alex Ross
Phil Johnson running Yorkshire Marathon to raise awareness of Polycystic Kidney Disease (PKD) Charity
A RUNNER suffering from a rare kidney disease is preparing for an uphill battle to raise awareness of a hereditary condition affecting men in his family.
Phil Johnson, from York, is tackling the Plusnet Yorkshire Marathon on October 12 for Polycystic Kidney Disease (PKD) Charity - a disease the 33-year-old has been diagnosed with along with his eldest and middle brother, as well as many of his uncles and cousins.
The disease is a genetic disorder of the kidneys and often results in patients undergoing transplant operations to prolong their lives.
Phil said: "My goal was to get fit, drop some weight, and more importantly to raise money for the Polycystic Kidney Disease (PKD) Charity, which is very close to my heart.
"I suffer from PKD myself, along with both of my brothers. It has been passed through the family and affects many of my uncles and cousins.
"Over the years some of my uncles have had to undergo transplants, but more recently - just a couple of years ago in fact - my eldest brother was fortunate enough to receive a successful kidney transplant just one year after starting dialysis.
"He had his ups and downs and several stays in hospital through infections, but is now fit and healthy after being given a new lease of life thanks to the organ donor.
"Given all of the support that he received I felt it only right that I help to raise funds to support vital research into this condition which effects so many people."
Phil is being joined on the 26.2-mile course by his brother, a retired regimental sergeant major in the Coldstream Guards, who is running for the Combat Stress charity.
He served 26 years in the armed forces before being diagnosed with PKD.
Phil added: "My longest run so far is 20 miles, and I know that those last six will be pure hell. Yet I also know that crossing that finish line will probably be the single greatest achievement I have ever made."
For up to date marathon coverage and information go to www.thepress.co.uk where you can also join in the fun by sending us your stories, pictures and messages of support or email alexander.ross@thepress.co.uk
To sponsor Mr Johnson visit www.justgiving.com/philjpjohnson
From CNW, Canadian News Wire
This year marks the PKD Foundation of Canada's 13th Annual Walk for Polycystic Kidney Disease (PKD).
The most common form of PKD is autosomal dominant polycystic kidney disease (ADPKD), which affects 35-66,000 Canadians. ADPKD is the most common, life-threatening, hereditary renal cystic disease and the fourth leading cause of kidney failure.1,2,3,4 Currently, there is no treatment approved to slow the progression of the disease, and if not diagnosed and optimally managed, it can cause irreversible damage.
The Walk for PKD is the PKD Foundation of Canada's signature fundraising event with the goal each year to raise awareness of, and support for, the fight to end PKD. Money raised will go towards research for treatments for PKD as well as education and support services, both online and in local communities. The Walk has raised more than $640,000 since 2007.
Come join us on September 28. A Cure is Our Finish Line.
The most common form of PKD is autosomal dominant polycystic kidney disease (ADPKD), which affects 35-66,000 Canadians. ADPKD is the most common, life-threatening, hereditary renal cystic disease and the fourth leading cause of kidney failure.1,2,3,4 Currently, there is no treatment approved to slow the progression of the disease, and if not diagnosed and optimally managed, it can cause irreversible damage.
The Walk for PKD is the PKD Foundation of Canada's signature fundraising event with the goal each year to raise awareness of, and support for, the fight to end PKD. Money raised will go towards research for treatments for PKD as well as education and support services, both online and in local communities. The Walk has raised more than $640,000 since 2007.
Come join us on September 28. A Cure is Our Finish Line.
Using Art to Personalize the Issue to Political Leaders
Artists Chips Mackinolty and Therese Ritchie said the 14 prints, also featuring John Howard and Cate Blanchett, were a call to action for treating and preventing the disease, which is especially prevalent in remote Indigenous communities.
"Aboriginal people are always being depicted as poor buggers and victims because their life experiences are very grim," said Mr Mackinolty, a well-known Darwin identity who has worked with Aboriginal primary health care services.
"This is about turning the tables to see how it would be if prominent influential people had end-stage kidney disease, and they all had to spend five hours a day three days a week on dialysis.
"Aboriginal people in their early 20s are on dialysis. Short of a transplant it is a death sentence."
'Australia's home-grown horror' a leading cause of death
In April this year Kidney Health Australia said diabetes was "out of control".
From 2001 to 2008 the number of Indigenous Australians receiving treatment for end-stage kidney disease increased by 72 per cent.
A recent ABS survey found Indigenous adults experience diabetes 20 years earlier than non-Indigenous adults. One in five Aboriginal adults had chronic kidney disease.
Gift of Life
Just nine months ago, Andrea Kringstein and Annaleigh Sage Bergman were perfect strangers.
Andrea, a mother of two, suffers from polycystic kidney disease, a genetic condition where cysts grow, slowly causing kidney failure.
“The doctors told me that at a certain level I needed to go on a (transplant) list because my kidneys were going to fail,” Andrea told TODAY.
With no treatment and no cure and her kidney function only at 12 percent, Andrea went on a desperate search to find a match.
She turned to a non-profit website called MatchingDonors.com, a database where patients are introduced to people willing to donate. They don't make any money by donating organs or tissues.
Visit MatchingDonors.com if you’re interested in a living altruistic donor or would like to register as one
“I was reading her profile from top to bottom and feeling like it could've been me,” Sage said. “It was a deep personal connection right away. Talking about her children in her profile really hit me hard because children need their mother.”
After months of grueling tests, doctors finally confirmed Andrea and Sage were a match.
Find out more about becoming a living donor
“She gives me hope, she is an incredible person,” an emotional Andrea recalled.
Over the last 10 years, over 350 patients have received a lifesaving transplant after meeting on the website.
Paul Dooley started the non-profit after doctors told his cancer-stricken father that he needed a kidney transplant too. [Read more]
PKD Research
From Renal & Urology News, by Jody Charnow Editor
Controlling Hypertension in PKD patients following a renal transplant.
Native unilateral nephrectomies in conjunction with renal transplantation in patients with autosomal dominant polycystic kidney disease (ADPKD) can improve control of hypertension, according to study findings presented at the 32nd World Congress of Endourology in Taipei, Taiwan.
A team at Indiana University School of Medicine in Indianapolis led by Chandru P. Sundaram, MD, retrospectively examined hypertension control in 143 ADPKD patients who underwent renal transplantation from 2003 to 2013. William Goggins, MD, performed the transplantation and the concurrent nephrectomies. Dr. Sundaram performed the laparoscopic contralateral native nephrectomies.
Of the 143 patients, 67 underwent transplantation alone and 76 underwent transplantation with concurrent unilateral native nephrectomy. The nephrectomy group included 40 who had a native kidney removed at the time of transplantation and 36 who had a staged contralateral native nephrectomy. The staged nephrectomies were completed in a median of 9.8 months post-transplantation via a laparoscopic approach.
Comparing preoperative to postoperative antihypertensive medication use, patients who underwent native concurrent unilateral nephrectomy had a significantly greater decrease in the mean number of medications at 12, 24, and 36 months follow-up than those who underwent transplantation alone (-1.2 vs. -0.5, 1.1 vs. 0.3, and -1.2 vs. 0.4, respectively).
The nephrectomy patients also experienced significantly greater decreases in defined daily dose (DDD) of antihypertensive drugs at 12, 24, and 36 months (-3.3 vs. -1.0, -2.9 vs. -1.0, and -2.7 vs. 0.6, respectively). Greater hypertension control was achieved in patients undergoing staged completion native nephrectomies. [Read more]
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