From Daily Mail, United Kingdom, By MARTYN HALLE
A family with 11 members who have each received a donor kidney has set a UK transplant record.
All of them suffer a genetic condition called Polycystic Kidney Disease (PKD).
Briggetta Greenaway, 55, who joined her brother, two uncles, three aunts and four cousins in the transplant club, said: ‘We are a unique family.’
Her uncle Bill Smith was the first family member to receive a transplant in 1963 in one of the UK’s first kidney transplants.
He died four months later of organ rejection, but four of his siblings had successful transplants between 1986 and 1998.
The disease is now into the third generation of the family, with five of Briggetta’s nephews likely to need a transplant in the near future.
Briggetta, a care worker from Chesterfield, who received her transplant in 1999, said: ‘We have all said thank you for this gift of life by keeping ourselves fit and healthy.’
She has traced the disease back to her grandfather Will Smith, who died aged 50. All of his eight children had PKD. [Read more]
A West Roxbury family has been steadily raising funds for their son since May, but is still welcoming support and donations.
Thomas Lane, of West Roxbury, was born on June 28, 2012 and is battling a rare kidney disease known as Autosomal Recessive Polycystic Kidney Disease (ARKPD), according to a GoFundMe.com page set up by his family.
"Thomas is our little hero and has quite the battle ahead of him," Marie McGillycuddy, Lane's aunt, wrote on the GoFundMe.com/ThomasFight page. "He has spent the majority of his life hospitalized and has undergone several major surgeries including nephrectomy, a tracheostomy and several feeding tube placements. Currently Thomas relies on a ventilator 24 hours a day in order to breathe, due to lung complications. Unfortunately Thomas also suffers from Caroli Syndrome, a cystic disease of the liver which affects 1 in 1 million people."
A Facebook page has also been set up to provide the family's supporters with updates. To donate to Lane's, visit the family's GoFundMe.com page here.
KANSAS CITY, Mo. - You've seen plenty of yard signs for sales or campaigns, but one Missouri woman is using a yard sign to campaign for the fight of her life.
Amy Staples isn't worried about aging.
"Every birthday is great," she smiled. Every year is a blessing. She's battling polycystic kidney disease. It destroyed her kidneys and they had to be removed. She has been on dialysis for more than a decade. She spends more than 40 hours a week at home in a chair hooked up to her large dialysis machine.
"I consider it a full-time job," Amy said, shaking her head. She'd rather be working, but she recently had to stop working full time. Her condition just doesn't allow a lot of physical labor. The genetic disease has already killed her two sisters and one brother while they were waiting for a transplant on dialysis just like Amy.
She makes the two-hour drive to Kansas City with her husband regularly for pain management treatment. Between her type-O blood and complications from a blood infection, she is an incredibly difficult match for a donor. That's part of the reason she has been waiting so long, when the average wait time in the Kansas City area is about two years. [Read more]
Two new lawsuits have been filed by kidney dialysis patients and their families, alleging that two Fresenius Medical Care North America products caused heart attacks. The two new cases, filed in federal court in Massachusetts on Dec. 16, are the latest in an avalanche of more than 300 lawsuits against the company, which has its U.S. headquarters in Waltham, Mass.
The two products were the subject of the most serious type of U.S. Food and Drug Administration recall in March of 2012.
Plaintiffs allege that Fresenius knew of the dangers of the product as early as 2005. They also point to an internal memo dated November 2011, in which Fresenius describes the results of an internal study and warns all Fresenius-owned or -operated dialysis centers to adjust the settings on dialysis machines to offset inappropriately high bicarbonate levels caused by the two products in questions, called Naturalyte and Granuflo. Naturalyte, a liquid, and Granuflo, a powder, are chemicals used to remove toxins in the blood during dialysis treatment. [Read more]
A group of people suffering from renal failure have formed an organization to rally support and seek government subsidies for health care.
The Dialysis Assistance and Welfare Association are set to help people who can’t afford dialysis treatment.Association Secretary Satya Lingam says they had their first audience with the Heath Minister in June this year.
“The Minister has assured us once the patients are given the medical identification card, they using those cards the patients will be able to purchase in the injections from the pharmacy at a subsidized rate, and also he has assured us the dialysis costs, the minister assured us they will be renegotiating with the Kidney Foundation so that the cost could come down, and five months have gone by we have not have seen any progress so far, so we have written a remainder.”
Satya Lingam says they weren’t expecting a six month delay, and even sent a letter to Dr. Neil Sharma reminding him of his assurances.
“Patients would be able to get the injection at $25, currently they are paying $60 and they wuld be getting it $25 from the government pharmacy in addition to that all other medication costs would be subsidized by the ministry of health, and that’s what the minister had agreed." [Read more]
Kidney Research
A team of Australian scientists led by the University of Queensland has successfully grown tiny kidneys from stem cells. It's hoped the breakthrough will eventually see new organs grown for people with chronic renal disease, cutting the huge demand for donor organs.
Australian researchers have grown a rudimentary kidney in the laboratory from human stem cells, an advance they say could lead to better ways of treating renal disease and testing drug safety.
Professor Melissa Little, from the University of Queensland's Institute for Molecular Bioscience, and colleagues, were able to guide embryonic stem cells to produce the cell types needed to 'self-organise' into a miniature kidney in a dish.
"It's much smaller than an adult kidney. It's essentially a little developing kidney," says Little.
The key to achieving this outcome was providing the cells with perfectly-calibrated combinations of molecules called growth factors.
By bathing the stem cells in particular concentrations of growth factors at particular times, they were able to guide them to grow and differentiate in a process that mimicked normal development.
"We had to walk the cells through all the steps they normally would take during development," says Little. "We used what normally happens in development to tell us what to add."
The researchers were initially aiming to coax the stem cells to produce just one type of kidney cell. But they were surprised to find that they had managed to form two key cell types, both of which are required to assemble a kidney. The research is published in the journal Nature Cell Biology. [Read more]
From US News & World Report
Drugs called ACE inhibitors and ARBs may help patients avoid dialysis as well, researchers say
MONDAY, Dec. 16, 2013 (HealthDay News) -- Drugs that help lower blood pressure may reduce the risk of early death for people with advanced kidney disease, a new study finds.
The drugs could also lower patients' odds of requiring dialysis, the researchers said.
The new study out of Taiwan focused on two types of high blood pressure drugs, angiotensin-converting enzyme inhibitors (ACE inhibitors) and angiotensin II receptor blockers (ARBs).
ACE inhibitors have long been a standby of blood pressure care, and include drugs such as Altace (ramipril), Vasotec (enalapril) and Lotensin (benazepril, among others). ARB medications are also used to lower blood pressure, and include medications such as Atacand (candesartan), Cozaar (losartan), and valsartan (Diovan, among others).
Both classes of drugs have been known to delay the progression of chronic kidney disease in patients with and without diabetes, the Taiwanese authors noted. However, most large studies of ACE inhibitors or ARBs have excluded patients with advanced chronic kidney disease, so it hasn't been known how these drugs affect this group of patients.
So, this new study included nearly 28,500 advanced chronic kidney disease patients with stable high blood pressure. During a follow-up of seven months, nearly 71 percent of the patients had to begin dialysis and 20 percent died before reaching that stage.
Patients who took an ACE inhibitor or an ARB had a 6 percent lower risk of dialysis or death than those who didn't take the drugs, according to the study published online Dec. 16 in the journal JAMA Internal Medicine. [Read more]
From HealthCanal.com
For 11,000 Australians kidney dialysis is not something to laugh about. However a good chuckle might well be the best thing for them.
In an Australian first, Deakin University’s Associate Professor Paul Bennett is leading a research team that is measuring the impact Laughter Yoga has on the health and wellbeing of patients on dialysis.
“Patients fronting up for dialysis for five hours a day, three times a week are often feeling down and experience lethargy, cramps, low blood pressure, anorexia and needle pain, so laughing is probably the last thing they feel like doing,” Associate Professor Bennett said.
“However Laughter Yoga has the potential to improve their mood and general wellbeing. Through this new study we will be measuring the impact Laughter Yoga has on the lung function, mood and well-being of patients undergoing treatment at the Monash Health’s Moorabbin Dialysis Centre.”
Laughter Yoga is based on the theory that voluntary laughter provides the same physiological and psychological benefits as spontaneous laughter including decreasing anxiety and improving mood and blood pressure. During the sessions patients are taken through 30 minutes of simulated laughing with controlled breathing and short exercises that involve clapping, neck and shoulder stretches, all designed for the limited mobility the patients have while hooked up to dialysis machines. [Read more]
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