From Tech Times, By Katrina Pascual
Through a method called desensitization, doctors successfully altered the immune system of patients to enable them to accept kidneys from incompatible donors. Substantially more patients remained alive after eight years compared to those who stayed on waiting lists or received their kidney from a dead donor.
“[This] has the potential to save many lives,” reports Dr. Jeffrey Berns, kidney expert at the University of Pennsylvania and president of the National Kidney Foundation.
Clint Smith, a 56-year-old New Orleans lawyer, would no longer spend the rest of his life on kidney dialysis after undergoing the procedure, which he believed changed his life.
Desensitization filters the antibodies out of the patient’s blood, and then offers him an infusion of other antibodies for protective action, while the immune system is regenerating its own antibodies. It is unclear how, but the reproduced antibodies prove less likely to attack the transplanted organ.
If the regenerated antibodies remain a concern, drugs are provided to destroy any white blood cell that would prompt the antibodies to attack the kidney.
"We used to say if you had a compatible donor, you could do a transplant. Now you can say, if you have an incompatible donor, we still can make that transplant happen," says Dr. Dorry Segev of John Hopkins University and study's senior author.
The eight-year survival rates were nearly 77 percent among 1,025 patients who received an incompatible kidney from a live donor, and 63 percent for more than 5,100 matched patients remaining on a waiting list or received a new organ from a deceased donor. It was 44 percent, on the other hand, for more than 5,100 who stayed on the waiting list without getting a kidney.
The research was conducted at 22 medical centers, projected to help about 32,000 individuals in the United States who have anti-HLA antibodies, or those whose immune systems were technically unfit to the donated kidney.
Kidney exchange has risen in recent years as a viable option for those with incompatible living donors, where they could swap donors with someone else. The exchanges have often led to compatible organ pairs. Still, the patients’ antibodies would get in the way, rejecting almost every donated organ.
“[D]esensitization may be the only realistic option for receiving a transplant [in this case],” says Dr. Krista Lentine of the Saint Louis Center for Abdominal Transplantation, who was not involved in the research.
The procedure is expensive, costing up to $30,000 and using drugs that are not approved for the said purpose. The transplant could cost $100,000. Still, specialists argued that desensitization could be cheaper in the long term compared to dialysis, where one could incur $70,000 a year in expenses for the rest of his life.
The findings were published in the New England Journal of Medicine.
One of them has studied ways to make plastic decompose more quickly.
Another has been working on using skin cells to grow kidney tissue, taking steps toward a new treatment for kidney disease.
And a third invented a device to diagnose lung diseases in developing countries. It’s made out of $35 worth of materials — patent pending.
They are among 40 U.S. teenagers who have been named finalists in the prestigious Intel Science Talent Search, which recognizes rising stars who have done notable original research. All 40 will be in Washington this weekend competing for $1 million in scholarship awards, including three top prizes of $150,000 each.
It can be deeply humbling to scroll through their project descriptions and biographies. And it also can inspire hope: These young people are looking for answers to some of the world’s most intractable problems, and they’re making important progress. They also have interests outside of science, from dancing to skiing to soccer and music.
Demetri Maxim, 18, has created a method to bioengineer kidney tissue from a patient’s own cells, work that he hopes eventually will mean that scientists will be able to grow new kidneys for people suffering from chronic kidney disease, so they won’t have to wait for an organ donor or risk their bodies rejecting a donor’s kidney.
“I was essentially growing kidneys in a cell, that’s how my friends say it,” said Maxim, a senior at Gould Academy in Bethel, Maine.
The project is personal for him. He has polycystic kidney disease, a genetic condition that leads to kidney failure. His grandfather and his great-grandfather also had the same condition, and his mother nearly died from it; a kidney transplant saved her life.
“I have the same disease that my mom does, so someday I’m going to need a kidney,” Maxim said.
Maxim said he had to teach himself a lot of basic research skills by reading papers and taking online tutorials. But last summer, after sending out countless emails to researchers, he found a Harvard professor who was willing to serve as a mentor and give him access to a real lab. The professor, it turned out, had years earlier diagnosed Maxim’s mother with polycystic kidney disease.
Maxim used skin cells to grow stem cells using a lab protocol developed by Nobel Prize-winning scientists. He used those stem cells to grow kidney cells. And then, to create tissue, he transferred those kidney cells onto a three-dimensional structure. That 3-D structure was composed of de-cellulized mouse tissue, or mouse tissue stripped of all its cells.
Maxim then tested the kidney cells by transplanting them into a live mouse with a functioning kidney. He found that the cells survived and became integrated into the mouse’s organ.“And that’s never been done before,” Maxim said. “It’s one thing to have cells in a dish, but it’s a totally different story to have functional tissue.”
There’s still a lot of work to be done before human patients can receive organ transplants grown from their own cells. But Maxim plans to stick with it when he goes to college next year.
Meantime, he’s been helping his high school create a research program for other aspiring young scientists. He applied for grants and solicited donations that allowed him to build a lab at the school, and he’s been teaching freshmen and sophomores how to do basic lab work.
Maxim said it’s difficult to find other students his age who are interested not just in skiing and soccer and music, as he is, but also deeply interested in science. He said he was shocked to be an Intel finalist, and is excited to spend time with the other 39 finalists. “You’re with your real friends for a week,” he said. “That’s what I’m most looking forward to.” [Read more]
From The Irish Times, Dublin, Ireland, by Dick Ahlstrom
Irish engineer wins major prize for kidney dialysis design
Irish engineer Vincent Garvey, who has won a major international prize for his design for a low-cost kidney dialysis machine.
An Irish engineer has won a major international prize after designing a low-cost kidney dialysis machine.
Smaller than a suitcase and geared for use in the developing world, the machine has the potential to save millions of lives in countries where conventional kidney treatments are either too expensive or difficult to access.
The engineer, Vincent Garvey, is originally from Donaghpatrick, Co Meath, but has spent the past 15 years in China, where he runs engineering consultancy firm MD Devices.
The goal of the Affordable Dialysis Prize 2016 was to design a portable dialysis machine costing about €900 for use in places where there was no assured electricity supply or clean water.
Conventional dialysis machines typically cost between €18,000 and €27,000.
Mr Garvey took up the challenge with a design that could be used anywhere, with solar power used to produce the sterile water needed to help clear the body of life-threatening toxins.
He scooped the prize, worth €91,000, after a unanimous decision by the international panel of judges.
His win was announced on Thursday, which was World Kidney Day.
Mr Garvey said it was “incredible” to win the prize.
There were millions of people worldwide who don’t have access to dialysis “and currently suffer pretty awful deaths”, he said.
“Vincent has been inventing things his whole life,” said his sister Maria, who lives in Dublin.
“The family is very proud and delighted for him.”
Mr Garvey had just retired from full-time work and was visiting family inAustralia when he heard about the dialysis prize.
“I worked on the design last year in Australia. It was much more fun than trying to be a retiree,” he said.
“It looked like it would make a huge contribution if it worked.”
He is now developing the system to bring the design into use.
Prototypes
A Melbourne company is making and testing prototypes and he is looking for a firm to manufacture the machine.
It may be possible to test the system on animals within 12 months and on humans in about three years, he said.
A study published by The Lancet found more than nine million people needed access to dialysis for terminal kidney failure worldwide, but only 2.6 million received this life-saving treatment.
Living with PKD
From Hungry Forever
Here Are Some Diet Recommendations for Individuals With Chronic Kidney Disease
Causes, Symptoms and Diagnosing CKD
Individuals with hypertension and diabetes are more at a risk of developing CKD. Other causes include genetics, infections, polycystic kidney disease as well as hereditary factors; if an individual has family members with CKD, they are more likely to develop it themselves.
The symptoms of CKD are mild in its early stages but tend to become more obvious as it progresses. Common symptoms include dizziness, breathlessness, fatigue, swelling, rashes, and nausea.
If evidence points to the possibility of CKD a doctor can carry out a variety of tests to diagnose the condition including blood tests, urine tests and a kidney sonography.
Treatment and Management
While CKD is a lifelong disease, there are various ways to slow it down or halt it from progressing to the fifth stage of the condition, known as ‘End Stage Kidney Disease’. These include managing diabetes and blood pressure to ensure that it does not get out of hand and aggravate the CKD.
Other management techniques include diet control and, in the latter stages of CKD, dialysis, in which kidneys are manually cleansed of toxins. Here are dietary factors that a patient with CKD should know about:
Low Versus High Protein Diet
Many medical practitioners recommend a low protein diet for patients not on dialysis. This is because when the body digests protein, urea – a waste product – is produced. Normally, the kidneys dispose of the urea, but if not functioning properly the urea can build up in the blood, causing fatigue.
Therefore, cut down on your intake of protein daily, trying to limit yourself to 1 gram per kilogram of your body weight a day.
However, once a patient starts dialysis, they should switch to a high protein diet to replace the tissues that are lost in the process. Protein rich foods include fish, poultry, meat and dairy – depending on the stage of CKD limit or increase their intake as necessary. Vegans can try breads, cereals, beans or pasta.
Limit Foods High In Phosphorus
Phosphorus, a mineral found in bones typically helps maintain strong bones. However, excess levels of phosphorus can leech calcium from the bones making them brittle and more liable to breaking. Functioning kidneys work to remove excess levels of phosphorus, but an individual with CKD needs to cut down on phosphorus rich foods as the kidneys can no longer carry out this task.
High phosphorus foods include cheese, custard, milk, yogurt, ice cream, colas, carp, chicken liver and other offal, lentils and beans, seeds and nuts. As you can see, some of these foods are the same an individual on a high protein diet would need to take in, so consult with a dietician for alternative protein supplements you can take if you need to limit your intake of phosphorus.
Increase Your Intake Of Carbohydrates
Many experts recommend increasing your intake of carbohydrates if you are put on a low protein diet as they can help make up for the calories lost from not eating a lot of protein. However, ensure that the carbohydrates you eat do not contain high phosphorus levels or – if you’re a diabetic -a large amount of processed sugars.
Fluids
As your CKD progresses, a doctor will recommend you reduce your intake of fluids as a fluid build-up can cause breathing problems. Monitor your intake of fluids as per doctor advice and cut down on eating water rich foods like fruits, ice cream, soups and tomatoes.
Limit Sodium Intake
As well as helping you manage high blood pressure, which is one of the causes of CKD, a low sodium diet will ensure you feel thirsty less often. Having less sodium in your body will allow it to release extra fluid more easily.
Try not to add too much salt to your daily meals, snack on unsalted munchies and study the sodium content of processed food packaging before eating it.
While these are some general tips that an individual with CKD can follow to improve their quality of life, it’s important to realise that according to the stage and causes of the condition, dietary advice can change. So, use this information as a supplement to doctor recommendations and consult with a dietician to reach a diet plan that will allow you to reach the highest quality of life possible with the condition.
From News24, Cape Town, South Africa, by Tladi.Moloi
Kidney disease tough to identify
Smaller than a suitcase and geared for use in the developing world, the machine has the potential to save millions of lives in countries where conventional kidney treatments are either too expensive or difficult to access.
The engineer, Vincent Garvey, is originally from Donaghpatrick, Co Meath, but has spent the past 15 years in China, where he runs engineering consultancy firm MD Devices.
The goal of the Affordable Dialysis Prize 2016 was to design a portable dialysis machine costing about €900 for use in places where there was no assured electricity supply or clean water.
Conventional dialysis machines typically cost between €18,000 and €27,000.
Mr Garvey took up the challenge with a design that could be used anywhere, with solar power used to produce the sterile water needed to help clear the body of life-threatening toxins.
He scooped the prize, worth €91,000, after a unanimous decision by the international panel of judges.
His win was announced on Thursday, which was World Kidney Day.
Mr Garvey said it was “incredible” to win the prize.
There were millions of people worldwide who don’t have access to dialysis “and currently suffer pretty awful deaths”, he said.
“Vincent has been inventing things his whole life,” said his sister Maria, who lives in Dublin.
“The family is very proud and delighted for him.”
Mr Garvey had just retired from full-time work and was visiting family inAustralia when he heard about the dialysis prize.
“I worked on the design last year in Australia. It was much more fun than trying to be a retiree,” he said.
“It looked like it would make a huge contribution if it worked.”
He is now developing the system to bring the design into use.
Prototypes
A Melbourne company is making and testing prototypes and he is looking for a firm to manufacture the machine.
It may be possible to test the system on animals within 12 months and on humans in about three years, he said.
A study published by The Lancet found more than nine million people needed access to dialysis for terminal kidney failure worldwide, but only 2.6 million received this life-saving treatment.
Living with PKD
From Hungry Forever
Here Are Some Diet Recommendations for Individuals With Chronic Kidney Disease
Causes, Symptoms and Diagnosing CKD
Individuals with hypertension and diabetes are more at a risk of developing CKD. Other causes include genetics, infections, polycystic kidney disease as well as hereditary factors; if an individual has family members with CKD, they are more likely to develop it themselves.
The symptoms of CKD are mild in its early stages but tend to become more obvious as it progresses. Common symptoms include dizziness, breathlessness, fatigue, swelling, rashes, and nausea.
If evidence points to the possibility of CKD a doctor can carry out a variety of tests to diagnose the condition including blood tests, urine tests and a kidney sonography.
Treatment and Management
While CKD is a lifelong disease, there are various ways to slow it down or halt it from progressing to the fifth stage of the condition, known as ‘End Stage Kidney Disease’. These include managing diabetes and blood pressure to ensure that it does not get out of hand and aggravate the CKD.
Other management techniques include diet control and, in the latter stages of CKD, dialysis, in which kidneys are manually cleansed of toxins. Here are dietary factors that a patient with CKD should know about:
Low Versus High Protein Diet
Many medical practitioners recommend a low protein diet for patients not on dialysis. This is because when the body digests protein, urea – a waste product – is produced. Normally, the kidneys dispose of the urea, but if not functioning properly the urea can build up in the blood, causing fatigue.
Therefore, cut down on your intake of protein daily, trying to limit yourself to 1 gram per kilogram of your body weight a day.
However, once a patient starts dialysis, they should switch to a high protein diet to replace the tissues that are lost in the process. Protein rich foods include fish, poultry, meat and dairy – depending on the stage of CKD limit or increase their intake as necessary. Vegans can try breads, cereals, beans or pasta.
Limit Foods High In Phosphorus
Phosphorus, a mineral found in bones typically helps maintain strong bones. However, excess levels of phosphorus can leech calcium from the bones making them brittle and more liable to breaking. Functioning kidneys work to remove excess levels of phosphorus, but an individual with CKD needs to cut down on phosphorus rich foods as the kidneys can no longer carry out this task.
High phosphorus foods include cheese, custard, milk, yogurt, ice cream, colas, carp, chicken liver and other offal, lentils and beans, seeds and nuts. As you can see, some of these foods are the same an individual on a high protein diet would need to take in, so consult with a dietician for alternative protein supplements you can take if you need to limit your intake of phosphorus.
Increase Your Intake Of Carbohydrates
Many experts recommend increasing your intake of carbohydrates if you are put on a low protein diet as they can help make up for the calories lost from not eating a lot of protein. However, ensure that the carbohydrates you eat do not contain high phosphorus levels or – if you’re a diabetic -a large amount of processed sugars.
Fluids
As your CKD progresses, a doctor will recommend you reduce your intake of fluids as a fluid build-up can cause breathing problems. Monitor your intake of fluids as per doctor advice and cut down on eating water rich foods like fruits, ice cream, soups and tomatoes.
Limit Sodium Intake
As well as helping you manage high blood pressure, which is one of the causes of CKD, a low sodium diet will ensure you feel thirsty less often. Having less sodium in your body will allow it to release extra fluid more easily.
Try not to add too much salt to your daily meals, snack on unsalted munchies and study the sodium content of processed food packaging before eating it.
While these are some general tips that an individual with CKD can follow to improve their quality of life, it’s important to realise that according to the stage and causes of the condition, dietary advice can change. So, use this information as a supplement to doctor recommendations and consult with a dietician to reach a diet plan that will allow you to reach the highest quality of life possible with the condition.
MANY people who have chronic kidney disease do not know it, because the early signs can be very subtle.
It can take many years to go from chronic kidney disease (CKD) to kidney failure. Most people with CKD live out their lives without ever reaching kidney failure. People with stage 3 CKD have about an 80% chance of never having their kidneys fail.
At any stage of kidney disease, knowledge is power. Knowing the symptoms of kidney disease can help you get the treatment you need to feel your best.
If you or someone you know have one or more of the following symptoms of CKD, or you worry about kidney problems, see a doctor for blood and urine tests.
Remember, many of the symptoms can be caused by other health problems. The only way to know the cause of your symptoms is to see your doctor.
Changes in urination
Kidneys make urine, so when the kidneys are failing, changes in urine and urination may occur. Examples are:
You may have to get up at night to urinate.
Urine may be foamy or bubbly.
You may urinate more often, or in greater amounts than usual, with pale urine.
You may urinate less often, or in smaller amounts than usual, with dark-coloured urine.
Your urine may contain blood.
You may feel pressure or have difficulty urinating.
Swelling
Failing kidneys do not remove extra fluid, which builds up in your body causing swelling in the legs, ankles, feet, face or hands.
Fatigue
Healthy kidneys make a hormone called erythropoietin, also known as EPO, that tells your body to make oxygen-carrying red blood cells.
As the kidneys fail, they make less EPO. With fewer red blood cells to carry oxygen, your muscles and brain tire very quickly. This is anemia, and it can be treated.
Skin rash or itching
Kidneys remove wastes from the bloodstream. When the kidneys fail, the build-up of waste in your blood can cause severe itching.
Metallic taste in mouth or ammonia breath
A build-up of wastes in the blood (called uremia) can make food taste different and cause bad breath. You may also notice that you stop wanting to eat meat, or that you are losing weight because you just do not feel like eating.
Nausea and vomiting
Uremia can also cause nausea and vomiting. Loss of appetite can lead to weight loss.
Shortness of breath
Trouble catching your breath can be related to the kidneys in two ways. Firstly, extra fluid in the body can build up in the lungs. Secondly, anemia can leave your body oxygen-starved and short of breath.
Feeling cold
Anemia can make you feel cold all the time, even in a warm room.
Dizziness and trouble concentrating
Anemia related to kidney failure means that your brain is not getting enough oxygen. This can lead to memory problems, trouble with concentration and dizziness.
Leg or flank pain
The most common causes of CKD do not cause any pain. Also, much of the pain that is near the kidneys is not caused by a kidney problem. However, some people with CKD experience pain.
Some people with kidney problems may have pain in the back (where the kidneys are) or on the same side as the affected kidney. Causes include:
Polycystic kidney disease (PKD), which causes large, fluid-filled cysts on the kidneys and sometimes the liver, can cause pain.
Kidney infections and kidney stones can cause severe pain, often in spasms.
Bladder infections can cause burning when you urinate.
People with medullary sponge kidney say it is painful. – Lifeoptions.com
Knowing the symptoms of kidney disease can help you get the treatment you need to feel your best.
Pioneering progress on ADPKD: an interview with Tess Harris
It can take many years to go from chronic kidney disease (CKD) to kidney failure. Most people with CKD live out their lives without ever reaching kidney failure. People with stage 3 CKD have about an 80% chance of never having their kidneys fail.
At any stage of kidney disease, knowledge is power. Knowing the symptoms of kidney disease can help you get the treatment you need to feel your best.
If you or someone you know have one or more of the following symptoms of CKD, or you worry about kidney problems, see a doctor for blood and urine tests.
Remember, many of the symptoms can be caused by other health problems. The only way to know the cause of your symptoms is to see your doctor.
Changes in urination
Kidneys make urine, so when the kidneys are failing, changes in urine and urination may occur. Examples are:
You may have to get up at night to urinate.
Urine may be foamy or bubbly.
You may urinate more often, or in greater amounts than usual, with pale urine.
You may urinate less often, or in smaller amounts than usual, with dark-coloured urine.
Your urine may contain blood.
You may feel pressure or have difficulty urinating.
Swelling
Failing kidneys do not remove extra fluid, which builds up in your body causing swelling in the legs, ankles, feet, face or hands.
Fatigue
Healthy kidneys make a hormone called erythropoietin, also known as EPO, that tells your body to make oxygen-carrying red blood cells.
As the kidneys fail, they make less EPO. With fewer red blood cells to carry oxygen, your muscles and brain tire very quickly. This is anemia, and it can be treated.
Skin rash or itching
Kidneys remove wastes from the bloodstream. When the kidneys fail, the build-up of waste in your blood can cause severe itching.
Metallic taste in mouth or ammonia breath
A build-up of wastes in the blood (called uremia) can make food taste different and cause bad breath. You may also notice that you stop wanting to eat meat, or that you are losing weight because you just do not feel like eating.
Nausea and vomiting
Uremia can also cause nausea and vomiting. Loss of appetite can lead to weight loss.
Shortness of breath
Trouble catching your breath can be related to the kidneys in two ways. Firstly, extra fluid in the body can build up in the lungs. Secondly, anemia can leave your body oxygen-starved and short of breath.
Feeling cold
Anemia can make you feel cold all the time, even in a warm room.
Dizziness and trouble concentrating
Anemia related to kidney failure means that your brain is not getting enough oxygen. This can lead to memory problems, trouble with concentration and dizziness.
Leg or flank pain
The most common causes of CKD do not cause any pain. Also, much of the pain that is near the kidneys is not caused by a kidney problem. However, some people with CKD experience pain.
Some people with kidney problems may have pain in the back (where the kidneys are) or on the same side as the affected kidney. Causes include:
Polycystic kidney disease (PKD), which causes large, fluid-filled cysts on the kidneys and sometimes the liver, can cause pain.
Kidney infections and kidney stones can cause severe pain, often in spasms.
Bladder infections can cause burning when you urinate.
People with medullary sponge kidney say it is painful. – Lifeoptions.com
Knowing the symptoms of kidney disease can help you get the treatment you need to feel your best.
From News-Medical, United Kingdom
Can you give me a brief overview of autosomal dominant polycystic kidney disease (ADPKD), its prevalence and how it affects patients?
ADPKD is a chronic, progressive and inherited kidney disease characterized by fluid-filled cysts that develop in the kidneys and other organs. It is the most common inherited kidney disease, and affects millions worldwide. There are no epidemiological registries that can give precise numbers affected.
Prevalence figures vary between 3 to 4 in 10,000 diagnosed patients, so well over 200,000 in the EU. ADPKD is an important cause of chronic kidney disease (CKD) and kidney failure, accounting for one in 10 patients needing kidney dialysis or transplantation.
The direct EU cost of treating ADPKD patients on dialysis or transplant is approx. 1.5 billion Euros/year and this will double to €3 billion when one adds costs of other medication and care resulting from symptoms.
Outside of nephrology, ADPKD is little known, even though its sufferers require complex, multidisciplinary care with a comprehensive assessment of their manifestations, complications and prognosis - all of which vary dramatically between individuals owing to the genotype variability even within families.
Coupled to this complex care management, ADPKD is associated with high healthcare costs since many individuals progress to kidney failure requiring dialysis and/or transplantation at an earlier age than other kidney patients - e.g. in the UK, the age of kidney failure is 55, compared with 65 for non-ADPKD patients.
%20and%20Abnormal%20Kidney%20(renal%20failure)%20showing%20scarring%20(blue)-vetpathologist.jpg)
Normal Kidney (left) and Abnormal Kidney (renal failure) showing scarring (blue)
Aside from the clinical and economical manifestations, ADPKD has detrimental effects on various other aspects of an individual’s life. Individuals with ADPKD have commented that the condition has a negative impact on their employment, obtaining health and/or life insurance and increases anxiety and depression due to the concerns of dialysis and transplantation, and the impact of a dominantly inherited condition on themselves and their families.
Why is there no standardized treatment and knowledge base surrounding the disease? What factors have limited the progress towards standardization?
The optimization and standardization of ADPKD care in Europe is hampered by the lack of evidence-based consensus guidelines and standardized care pathways. Although recommendations have been developed in certain countries (e.g. Spain) and for specific medication they are limited by the lack of good-quality data on many aspects of care.
The EAF Report cites data from the ERA-EDTA registry showing that the prevalence of dialysis or transplantation use for ADPKD varies between European countries. This variation thought to be a result of international differences in policies governing access to, and reimbursement of, dialysis and transplantation.
Currently, kidney transplantation is the treatment of choice for ADPKD. However, financial pressures, a shortage of donors and limitations in medical, surgical and nursing expertise are preventing more widespread use of kidney transplantation.
What is the ‘Brussels Declaration on ADPKD’, what does it signify and what changes does it hope to make to EU policy?
The declaration is a ‘Call to Action’ to policy makers, hospital managers, patient groups and those interested in ADPKD care. The declaration:
Summarizes unmet needs in ADPKD
Presents six policy-focused recommendations
These recommendations are broadly grouped into the following themes:
Collaboration: Increase platform for continued dialogue and collaboration to improve the quality and longevity of lives of individuals with ADPKD
Improved care: Develop model for ADPKD ‘tiered care’
Research: Increased research collaboration
Empower: Increase influence of and role of patient groups and their role in health technology assessments (i.e. contributing to the assessment of medications)
The primary goals of the Declaration are:
Raise awareness of ADPKD and all its implications for patients, health services and economies in Europe
Recommend strategies to improve ADPKD care at EU & national levels
Encourage and facilitate collaboration between the individuals and groups involved in the management of ADPKD. [Read more]
The East Texas Chapter of the PKD Foundation will have a support and encouragement meeting for families affected by Polycystic Kidney Disease from 1 to 3 p.m. March 19 at the Hope Fellowship Church, 300 Hollybrook Drive in Longview.
This meeting is for PKD patients and their families, caregivers and friends. Everyone is invited to come to the free event to learn more about this hereditary disease. Snacks and drinks will be provided. For information, call Teresa at (903) 759-3141 or at eastexaschapter@pkdcure.org.
From The Daily Star, Oneanto, NY, By Jessica Reynolds
A Delaware County man whose life was saved by a kidney transplant is celebrating National Kidney Month by encouraging others to become organ donors.
More than 26 million Americans have chronic kidney disease and, because it can develop for years without noticeable symptoms, most of them don't know it, according to the National Kidney Foundation. If left untreated, chronic kidney disease can lead to kidney failure, requiring dialysis or a transplant for survival. There are more than 95,000 people waiting for kidney transplants, according to the foundation.
National Kidney Month is about raising awareness, but it's also about hope, highlighting medical advances and celebrating success stories, according to the foundation. Shayne Moshier, a 53-year-old Andes native, is one of these success stories.
Moshier was diagnosed at age 16 with polycystic kidney disease, a hereditary disorder in which clusters of cysts develop in the kidneys, he said Monday.
“My dad had it,” said Moshier, who owns a fabrication and welding shop in Andes. “I was able to maintain it quite well until my mid-40s, and that's when everything went to hell.”
For a year, Moshier — who was a member of the Andes Fire Department and on the town board — traveled three times a week to a Bassett Healthcare Network clinic in Oneonta to receive dialysis, he said, which is a process that helps filter toxins from the body when the kidneys can no longer perform these functions.
Soon, Bassett offered Moshier a game-changer: the option of home hemodialysis, which he did for five years, he said, all while serving on the town board and operating his business alongside his wife, Tina.
“The dialysis was time-consuming," Moshier said. "It took us about five hours. But for someone who's active, it's the way to go.”
After six years of dialysis, Moshier faced kidney failure and needed a transplant in order to live, he recalled. He was referred to Strong Memorial Hospital in Rochester. Nine months later, on Dec. 12 2013, he finally received a kidney transplant.
“I was in the hospital for five days,” Moshier said. “I was told that the donor was a 56-year-old male who had been hit by a car in Rochester. He donated many of his organs.” [Read more]
From WCMH, Channel 4 NBC Affiliate, Columbus, OH, By Carolyn Yaussy
Columbus woman receives kidney during National Kidney Month
Lori Coulter suffers from polycystic kidney disease, a condition that ends in kidney failure and causes a host of other complications.
Coulter spent two years on dialysis after her first transplanted kidney failed in April of 2014. Faced with a three- to five- year wait for a new kidney on the National Registry, Coulter turned to Facebook for help. She set up a page called Find a kidney for Lori, and to her surprise a complete stranger came to her rescue.
“Angela Allen is my angel donor. I don’t know her story as to what [or] why she decided to help but I’m so thankful and blessed that she did,” said Coulter.
Although many people from around the county were tested, Allen was Coulter’s match.
March is National Kidney Month, and fittingly both women will undergo surgery at the Ohio State University Wexner Medical Center on Tuesday.
Coulter feels blessed that Allen chose to get tested, saying, “It amazes me that there are people in the world who are willing to give an organ to a total stranger.”
ADPKD is a chronic, progressive and inherited kidney disease characterized by fluid-filled cysts that develop in the kidneys and other organs. It is the most common inherited kidney disease, and affects millions worldwide. There are no epidemiological registries that can give precise numbers affected.
Prevalence figures vary between 3 to 4 in 10,000 diagnosed patients, so well over 200,000 in the EU. ADPKD is an important cause of chronic kidney disease (CKD) and kidney failure, accounting for one in 10 patients needing kidney dialysis or transplantation.
The direct EU cost of treating ADPKD patients on dialysis or transplant is approx. 1.5 billion Euros/year and this will double to €3 billion when one adds costs of other medication and care resulting from symptoms.
Outside of nephrology, ADPKD is little known, even though its sufferers require complex, multidisciplinary care with a comprehensive assessment of their manifestations, complications and prognosis - all of which vary dramatically between individuals owing to the genotype variability even within families.
Coupled to this complex care management, ADPKD is associated with high healthcare costs since many individuals progress to kidney failure requiring dialysis and/or transplantation at an earlier age than other kidney patients - e.g. in the UK, the age of kidney failure is 55, compared with 65 for non-ADPKD patients.
Aside from the clinical and economical manifestations, ADPKD has detrimental effects on various other aspects of an individual’s life. Individuals with ADPKD have commented that the condition has a negative impact on their employment, obtaining health and/or life insurance and increases anxiety and depression due to the concerns of dialysis and transplantation, and the impact of a dominantly inherited condition on themselves and their families.
Why is there no standardized treatment and knowledge base surrounding the disease? What factors have limited the progress towards standardization?
The optimization and standardization of ADPKD care in Europe is hampered by the lack of evidence-based consensus guidelines and standardized care pathways. Although recommendations have been developed in certain countries (e.g. Spain) and for specific medication they are limited by the lack of good-quality data on many aspects of care.
The EAF Report cites data from the ERA-EDTA registry showing that the prevalence of dialysis or transplantation use for ADPKD varies between European countries. This variation thought to be a result of international differences in policies governing access to, and reimbursement of, dialysis and transplantation.
Currently, kidney transplantation is the treatment of choice for ADPKD. However, financial pressures, a shortage of donors and limitations in medical, surgical and nursing expertise are preventing more widespread use of kidney transplantation.
What is the ‘Brussels Declaration on ADPKD’, what does it signify and what changes does it hope to make to EU policy?
The declaration is a ‘Call to Action’ to policy makers, hospital managers, patient groups and those interested in ADPKD care. The declaration:
Summarizes unmet needs in ADPKD
Presents six policy-focused recommendations
These recommendations are broadly grouped into the following themes:
Collaboration: Increase platform for continued dialogue and collaboration to improve the quality and longevity of lives of individuals with ADPKD
Improved care: Develop model for ADPKD ‘tiered care’
Research: Increased research collaboration
Empower: Increase influence of and role of patient groups and their role in health technology assessments (i.e. contributing to the assessment of medications)
The primary goals of the Declaration are:
Raise awareness of ADPKD and all its implications for patients, health services and economies in Europe
Recommend strategies to improve ADPKD care at EU & national levels
Encourage and facilitate collaboration between the individuals and groups involved in the management of ADPKD. [Read more]
From Longview News-Journal, Texas
The East Texas Chapter of the PKD Foundation will have a support and encouragement meeting for families affected by Polycystic Kidney Disease from 1 to 3 p.m. March 19 at the Hope Fellowship Church, 300 Hollybrook Drive in Longview.
This meeting is for PKD patients and their families, caregivers and friends. Everyone is invited to come to the free event to learn more about this hereditary disease. Snacks and drinks will be provided. For information, call Teresa at (903) 759-3141 or at eastexaschapter@pkdcure.org.
Gift of Life
A Delaware County man whose life was saved by a kidney transplant is celebrating National Kidney Month by encouraging others to become organ donors.
More than 26 million Americans have chronic kidney disease and, because it can develop for years without noticeable symptoms, most of them don't know it, according to the National Kidney Foundation. If left untreated, chronic kidney disease can lead to kidney failure, requiring dialysis or a transplant for survival. There are more than 95,000 people waiting for kidney transplants, according to the foundation.
National Kidney Month is about raising awareness, but it's also about hope, highlighting medical advances and celebrating success stories, according to the foundation. Shayne Moshier, a 53-year-old Andes native, is one of these success stories.
Moshier was diagnosed at age 16 with polycystic kidney disease, a hereditary disorder in which clusters of cysts develop in the kidneys, he said Monday.
“My dad had it,” said Moshier, who owns a fabrication and welding shop in Andes. “I was able to maintain it quite well until my mid-40s, and that's when everything went to hell.”
For a year, Moshier — who was a member of the Andes Fire Department and on the town board — traveled three times a week to a Bassett Healthcare Network clinic in Oneonta to receive dialysis, he said, which is a process that helps filter toxins from the body when the kidneys can no longer perform these functions.
Soon, Bassett offered Moshier a game-changer: the option of home hemodialysis, which he did for five years, he said, all while serving on the town board and operating his business alongside his wife, Tina.
“The dialysis was time-consuming," Moshier said. "It took us about five hours. But for someone who's active, it's the way to go.”
After six years of dialysis, Moshier faced kidney failure and needed a transplant in order to live, he recalled. He was referred to Strong Memorial Hospital in Rochester. Nine months later, on Dec. 12 2013, he finally received a kidney transplant.
“I was in the hospital for five days,” Moshier said. “I was told that the donor was a 56-year-old male who had been hit by a car in Rochester. He donated many of his organs.” [Read more]
Lori Coulter suffers from polycystic kidney disease, a condition that ends in kidney failure and causes a host of other complications.
Coulter spent two years on dialysis after her first transplanted kidney failed in April of 2014. Faced with a three- to five- year wait for a new kidney on the National Registry, Coulter turned to Facebook for help. She set up a page called Find a kidney for Lori, and to her surprise a complete stranger came to her rescue.
“Angela Allen is my angel donor. I don’t know her story as to what [or] why she decided to help but I’m so thankful and blessed that she did,” said Coulter.
Although many people from around the county were tested, Allen was Coulter’s match.
March is National Kidney Month, and fittingly both women will undergo surgery at the Ohio State University Wexner Medical Center on Tuesday.
Coulter feels blessed that Allen chose to get tested, saying, “It amazes me that there are people in the world who are willing to give an organ to a total stranger.”
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