From Tallahassee.com, by Helen Schwarz
PKD Awareness Day has become personal for the Tallahassee Democrat's Helen Schwarz
Editor’s note:
Helen Schwarz, the administrative manager for the Tallahassee Democrat newsroom, has polycystic kidney disease and is in urgent need of a kidney transplant. She wrote the following article to raise awareness, not only of her own situation, but of the disease itself, which affects about 600,000 people in the United States, according to the National Institutes of Health.
Wednesday is National Polycystic Kidney Disease Awareness Day.
In July, the U.S. Senate agreed to designate the first Wednesday in September as National polycystic Kidney Disease Awareness Day. Thank you Sens. Blunt, Schumer, Cardin, Mikulski and Rubio for submitting this resolution. Take a minute to read the resolution at www.pkdcure.org; it will open your eyes to the impact this disease has on our nation. It is a start to raising awareness about polycystic kidney disease (PKD), which needs the same national attention as cancer, AIDS and other well known diseases...
A cure cannot be found without extensive research. Research cannot be done without funding. We need to find a cure, and we need to increase the awareness of PKD so that it comes to the forefront of discussion.
So what is PKD? PKD is the most common genetic, life-threatening disease, affecting more than 600,000 Americans and an estimated 12.5 million people worldwide. PKD does not pick favorites – it is in all races, ages, ethnic origins and both sexes. It is an inherited disease in either a dominant or recessive way. Autosomal dominant PKD (ADPKD) is the more common form of the disease inherited from a parent. Autosomal recessive PKD (ARPKD) is rarer and more severe.
Sadly, there is no cure for PKD. Treatment focuses on management of the symptoms. Treatment plans include low-sodium, low-fat diets for patients experiencing high blood pressure, pain medication or cyst removal for patients experiencing chronic pain, and dialysis or kidney transplant for patients experiencing kidney failure.
September is the month for PKD walks across the country. No walk is planned this year in Tallahassee, but you can still help by joining the National Walk and making a donation. My hope is that there will be a PKD chapter in Tallahassee and that we will have a PKD Walk in September 2014.
If you are interested in helping to form a PKD Chapter and being a part of PKD Walk 2014, please email me athelenneedsakidneydonor@comcast.net. Thank you for helping raise awareness of PKD. [Read more]
The Polycystic Kidney Disease Foundation has announced that Sept. 4 is PKD Awarness Day according to a U. S. Senate Resolution sponsored by Sen. Roy Blunt and co-sponsored by Sens. Benjamin Cardin, Barbara Mikulski, Marco Rubio and Charles Schumer.
This day was chosen to kick off the Walk for PKD season, which starts that next weekend. PKD Awareness Day will be devoted to raising awareness of this life-threatening, genetic disease and the critical need for treatments and a cure. Even though thousands in the U.S. are affected, the disease is relatively unknown, so raising awareness about PKD is vital. The more people that know about PKD, the closer we can get to treatments and a cure.”
PKD is a genetically transmitted disease that can potentially damage the kidneys, liver, and pancreas which leads to a variety of additional health problems including high blood pressure, heart attacks, strokes, brain aneurysms, and renal failure requiring dialysis or an organ transplant. There is no cure. There is no specific medication to treat the disease, only medications to treat the symptoms and consequences of Polycystic Kidney Disease.
Funds raised by and for the PKD Foundation go to medical research seeking to understand the disease and find successful treatments to slow down or stop the progression of the disease. Fundraising events are currently taking place across the United States including in Oklahoma. Volunteers conduct fundraisers in their communities then the Oklahoma Chapter of the PKD Foundation holds its annual Walk for PKD in Tulsa or Oklahoma City. This year’s Walk for PKD will take place at the Stars and Stripes Park at Lake Hefner in Oklahoma City on Saturday, September 28th from 9 am to 1 pm.
A PKD fundraiser is currently taking place in Woodward. Donations of $5 to the PKD Foundation get the donors’ names put in a drawing for several great donated prizes. The Grand Prize is two tickets to an upcoming OKC Thunder NBA basketball game in Oklahoma City (date TBA), plus a signed NBA basketball by Kevin Durant, and signed photograph of former OKC Thunder player, James Harden. The second name drawn will receive a signed photograph of the OU Women’s Basketball coach, Sherri Coale. The third name drawn will receive a limited edition signed photograph of former OSU football player, Barry Sanders. The fourth name drawn will receive a remote-controlled LEGO excavator kit. The four winners will be announced on October 1st.
Tickets for these prizes are available at the following businesses in Woodward: Razien Metals Company at 1002 Main Street, The Gazebo at 801 Main Street, Persimmon Creek at 906 Main Street, and Devine’s at 2121 Oklahoma Avenue.
For more information you may contact PKD Patient and Volunteer, Elise Solloway at 580-254-4722. - See more at: http://woodwardnews.net/local/x250206116/PKD-Awareness-Day-set#sthash.mU0WRfu1.dpuf
From LoHud.com, Bedford Hills, NY
In July, the U.S. Senate agreed to designate the first Wednesday in September as National polycystic Kidney Disease Awareness Day. Thank you Sens. Blunt, Schumer, Cardin, Mikulski and Rubio for submitting this resolution. Take a minute to read the resolution at www.pkdcure.org; it will open your eyes to the impact this disease has on our nation. It is a start to raising awareness about polycystic kidney disease (PKD), which needs the same national attention as cancer, AIDS and other well known diseases...
A cure cannot be found without extensive research. Research cannot be done without funding. We need to find a cure, and we need to increase the awareness of PKD so that it comes to the forefront of discussion.
So what is PKD? PKD is the most common genetic, life-threatening disease, affecting more than 600,000 Americans and an estimated 12.5 million people worldwide. PKD does not pick favorites – it is in all races, ages, ethnic origins and both sexes. It is an inherited disease in either a dominant or recessive way. Autosomal dominant PKD (ADPKD) is the more common form of the disease inherited from a parent. Autosomal recessive PKD (ARPKD) is rarer and more severe.
Sadly, there is no cure for PKD. Treatment focuses on management of the symptoms. Treatment plans include low-sodium, low-fat diets for patients experiencing high blood pressure, pain medication or cyst removal for patients experiencing chronic pain, and dialysis or kidney transplant for patients experiencing kidney failure.
September is the month for PKD walks across the country. No walk is planned this year in Tallahassee, but you can still help by joining the National Walk and making a donation. My hope is that there will be a PKD chapter in Tallahassee and that we will have a PKD Walk in September 2014.
If you are interested in helping to form a PKD Chapter and being a part of PKD Walk 2014, please email me athelenneedsakidneydonor@comcast.net. Thank you for helping raise awareness of PKD. [Read more]
From WoodwardNews, Woodward, OK
The Polycystic Kidney Disease Foundation has announced that Sept. 4 is PKD Awarness Day according to a U. S. Senate Resolution sponsored by Sen. Roy Blunt and co-sponsored by Sens. Benjamin Cardin, Barbara Mikulski, Marco Rubio and Charles Schumer.
This day was chosen to kick off the Walk for PKD season, which starts that next weekend. PKD Awareness Day will be devoted to raising awareness of this life-threatening, genetic disease and the critical need for treatments and a cure. Even though thousands in the U.S. are affected, the disease is relatively unknown, so raising awareness about PKD is vital. The more people that know about PKD, the closer we can get to treatments and a cure.”
PKD is a genetically transmitted disease that can potentially damage the kidneys, liver, and pancreas which leads to a variety of additional health problems including high blood pressure, heart attacks, strokes, brain aneurysms, and renal failure requiring dialysis or an organ transplant. There is no cure. There is no specific medication to treat the disease, only medications to treat the symptoms and consequences of Polycystic Kidney Disease.
Funds raised by and for the PKD Foundation go to medical research seeking to understand the disease and find successful treatments to slow down or stop the progression of the disease. Fundraising events are currently taking place across the United States including in Oklahoma. Volunteers conduct fundraisers in their communities then the Oklahoma Chapter of the PKD Foundation holds its annual Walk for PKD in Tulsa or Oklahoma City. This year’s Walk for PKD will take place at the Stars and Stripes Park at Lake Hefner in Oklahoma City on Saturday, September 28th from 9 am to 1 pm.
A PKD fundraiser is currently taking place in Woodward. Donations of $5 to the PKD Foundation get the donors’ names put in a drawing for several great donated prizes. The Grand Prize is two tickets to an upcoming OKC Thunder NBA basketball game in Oklahoma City (date TBA), plus a signed NBA basketball by Kevin Durant, and signed photograph of former OKC Thunder player, James Harden. The second name drawn will receive a signed photograph of the OU Women’s Basketball coach, Sherri Coale. The third name drawn will receive a limited edition signed photograph of former OSU football player, Barry Sanders. The fourth name drawn will receive a remote-controlled LEGO excavator kit. The four winners will be announced on October 1st.
Tickets for these prizes are available at the following businesses in Woodward: Razien Metals Company at 1002 Main Street, The Gazebo at 801 Main Street, Persimmon Creek at 906 Main Street, and Devine’s at 2121 Oklahoma Avenue.
For more information you may contact PKD Patient and Volunteer, Elise Solloway at 580-254-4722. - See more at: http://woodwardnews.net/local/x250206116/PKD-Awareness-Day-set#sthash.mU0WRfu1.dpuf
From LoHud.com, Bedford Hills, NY
The Hudson Valley Chapter of the PKD Foundation is holding a walk in support of those affected by polycystic kidney disease. PKD is a life-threatening genetic kidney disease affecting thousands in America and millions worldwide. It is the fourth leading cause of kidney failure, and there is no treatment or cure.
The Hudson Valley chapter is celebrating its 10th anniversary Walk for PKD, which is planned for Sept. 21 at Bedford Hills Memorial Park. Registration is at 9 a.m., with the walk beginning at 10 a.m., rain or shine. For more information and to register, visit walkforpkd.org/hudsonvalley.
Over the past decade, the chapter has raised in excess of $530,000 with more than 1,800 walkers participating.
The walk was started in 2004 by the Grossman family, with Heidi Grossman Cambareri serving as walk coordinator. Heidi was supported by her parents, Wayne and Sandy Grossman, and her sister Heather Grossman Buckley.
Wayne, Heidi, and Heather have PKD. Heidi was diagnosed with PKD at the age of 18 and is currently enrolled in a clinical trial with a drug called Tolvaptan, which shows promise as the first ever potential treatment for polycystic kidney disease. Her father, Wayne, had a kidney transplant 17 years ago after years of dialysis, following kidney failure due to PKD. The entire family will be walking with their team, Hooked on Hope, for the 10th time this year. Hooked on Hope has raised more than $25,000 since 2004. [Read more]
From BlueRidgeNow.com, Henderson, NC
The second Ella Grace Race to end polycystic kidney disease will be held Sept. 14 in Saluda. The 5K run, walk or crawl for people of all abilities and ages will kick off at 9 a.m. at Saluda Party Place and Event Center, formerly Saluda Jamboree.
Participants can register for the race before the event online atwww.imathlete.com with a keyword search of “Ella Grace Race.” A $20 registration fee and other donations raised from the event will go to the Polycystic Kidney Foundation in Ella Grace’s memory to help find a cure.
Pre-race registration will also be available at the event center from 7 a.m. to 8:45 a.m. For more information about the event, visit “2nd Annual Ella Grace Race” on Facebook.
Gift of Life
From StandardSpeaker.com, Greater Hazelton, PA, by Jill Whalen
City woman gives her father life-changing gift
Kayla Riccuitti gave her father an ultimatum.
Either Richard "Richie" Riccuitti was going to accept a kidney from her - or she was going to donate to someone else in need.
It took him about a year, but Richie finally took his daughter up on her offer.
"I just kept getting sicker and sicker," said Richie, whose kidneys were destroyed by polycystic kidney disease. Diagnosed with the untreatable hereditary disease when he was 14, he had been on a waiting list for a kidney for more than three years.
It wasn't until the last several years that the disease started to take a toll on him. He was exhausted. He had no appetite. If he ate, it felt like he had indigestion. With kidneys failing to filter his blood, he was slowly poisoning himself.
He eventually had to quit his job of 32 years due to the disabling disease.
Kayla, of Hazleton, said it was difficult to watch her father as he fell ill.
"It was different just because he was never somebody to really sit," she said. "He went from being very active to sitting two - and then three - days out of the week. It progressed from that to every day. He was just sitting. It wasn't like him."
Kayla told her father that she wanted to give him a kidney. She spoke to doctors about it, too, but they were initially hesitant.
"I think because of my age," the 24-year-old guessed. [Read more]
From NewHampshire.com, Londonderry, by April Guilmet
Need for kidney is latest challenge for Londonderry womanLife hasn’t been easy for Rosemarie Meuse these past several months, but she knows it’s a life worth living.
Still mourning the unexpected death of her husband, Philip, the Londonderry resident is now facing yet another challenge — the failure of her kidneys.
Meuse, 62, suffers from Polycystic Kidney Disease (PKD), a genetic condition she’s battled since being diagnosed in her early 20s.
The inherited disease, which often isn’t revealed until adulthood, causes numerous cysts to form on the kidneys and, over time, can cause reduced kidney function often leading to kidney failure. About half of all PKD patients experience kidney failure, according to statistics provided by the U.S. Department of Health and Human Services.
Meuse learned of her condition around the same time she and Philip got engaged.
“He knew this would one day happen,” Meuse said on Friday as she sat in her living room of the cozy home where the couple had hoped they’d spend many happy hours of retirement together.
Over the past year, Meuse’s painful condition has worsened and doctors at Brigham and Women’s Hospital had warned her she’d need a transplant within a year.
Philip Meuse, a Massachusetts optician and veteran of the United States Navy, had planned to donate one of his kidneys to his ailing wife, but it wasn’t to be.
On March 25, Meuse died unexpectedly — just days before he was scheduled for preliminary testing at the Boston hospital.
He was 66 years old. {Read more]
PKD Research
From MedicalXpress
Research findings point to new therapeutic approach for common cause of kidney failureNew research has uncovered a process that is defective in patients with autosomal dominant polycystic kidney disease, a common cause of kidney failure. The findings, which appear in an upcoming issue of the Journal of the American Society of Nephrology (JASN), point to a new potential strategy for preventing and treating the disease.
Polycystic kidney disease (PKD), the fourth leading cause of kidney failure worldwide, comes in two forms: autosomal dominantpolycystic kidney disease (ADPKD) develops in adulthood and is quite common, while autosomal recessive polycystic kidney disease (ARPKD) is rare but frequently fatal. ADPKD is caused by mutations in either of two proteins, polycystin-1 and polycystin-2, while ARPKD is caused by mutations in a protein called fibrocystin. There is no cure or widely adopted clinical therapy for either form of the disease.
Polycystin-1, polycystin-2, and fibrocystin are all found in a cell's primary cilium, which acts as the cell's antenna and is intimately involved in human embryonic development as well as the development of certain diseases, including PKD. "What we don't know, and were hoping to better understand, is what goes wrong with these proteins in the cells of PKD patients and what kinds of therapies might help those cells," said Joseph Bonventre, MD, PhD (Brigham and Women's Hospital).
Dr. Bonventre and his colleagues Benjamin Freedman, PhD and Albert Lam, MD led a team of scientists at Brigham and Women's Hospital, the Mayo Clinic, and the Harvard Stem Cell Institute as they studied cells obtained from five PKD patients: three with ADPKD and two with ARPKD. The investigators reprogrammed patients' skin cells into induced pluripotent stem cells, which can give rise to many different cell types and tissues. When the researchers examined these cells under the microscope, they discovered that the polycystin-2 protein traveled normally to the antenna, or cilium, in cells from ARPKD patients, but it had trouble reaching the antenna in ADPKD patients. When they sequenced the DNA in these ADPKD patient cells, the investigators found mutations in the gene that encodes polycystin-1, suggesting that polycystin-1 helps shepherd polycystin-2 to the cilium.
"When we added back a healthy form of polycystin-1 to our patient cells, it traveled to the cilium and brought its partner polycystin-2 with it, suggesting a possible therapeutic approach for PKD," explained Dr. Freedman. "This was the first time induced pluripotent stem cells have been used to study human kidney disease where a defect related to disease mechanisms has been found."
The researchers noted that reprogrammed stem cells from patients with ADPKD may also be useful for testing new therapeutics before trying them out in humans.
In an accompanying editorial, Alexis Hofherr, MD and Michael Köttgen, MD (University Medical Centre, in Freiburg, Germany) stated that the study has "laid the groundwork for using induced pluripotent stem cells in PKD research. This important step forward will provide novel opportunities to model PKD pathogenesis with human cells with defined patient mutations."
Explore further: Surprising mechanism discovered in polycystic kidney disease
More information: The article, entitled "Reduced Ciliary Polycystin-2 in iPS Cells from PKD Patients with PKD1 Mutations," will appear online on September 5, 2013, DOI: 10.1681/ASN.2012111089.
The editorial, entitled "Induced Pluripotent Stem Cells from Polycystic Kidney Disease Patients: A Novel Tool to Model the Pathogenesis of Cystic Kidney Disease," will appear online on September 5, 2013, DOI: 10.1681/ASN.2013070767
Journal reference: Journal of the American Society of Nephrology
Provided by American Society of Nephrology
From 7thSpace.com, Catalonian Region, Spain
Renal replacement therapy in ADPKD patients: a 25-year survey based on the Catalan registrySome 7-10% of patients on replacement renal therapy (RRT) are receiving it because of autosomal dominant polycystic kidney disease (ADPKD). The age at initiation of RRT is expected to increase over time.
Methods: Clinical data of 1,586 patients (7.9%) with ADPKD and 18,447 (92.1%) patients with other nephropathies were analysed from 1984 through 2009 (1984--1991, 1992--1999 and 2000--2009).
Results: The age at initiation of RRT remained stable over the three periods in the ADPKD group [56.7 +/- 10.9 (mean +/- SD) vs 57.5 +/- 12.1 vs 57.8 +/- 13.3 years), whereas it increased significantly in the non-ADPKD group (from 54.8 +/- 16.8 to 63.9 +/- 16.3 years, p <0.001).
The ratio of males to females was higher for non-ADPKD than for ADPKD patients (1.6--1.8 vs 1.1--1.2). The prevalence of diabetes was significantly lower in the ADPKD group (6.76% vs 11.89%, p <0.001), as were most of the co-morbidities studied, with the exception of hypertension.
The survival rate of the ADPKD patients on RRT was higher than that of the non-ADPKD patients (p <0.001).
Conclusions: Over time neither changes in age nor alterations in male to female ratio have occurred among ADPKD patients who have started RRT, probably because of the impact of unmodifiable genetic factors in the absence of a specific treatment. [Read more]
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