From News-Medical
Leading kidney charities launch social media campaign to raise awareness of polycystic kidney disease
Leading kidney charities call for international fist-bumps to combat most common inherited kidney disease
Polycystic Kidney Disease (PKD) International has joined forces with six European kidney charities to launch a social media campaign called Give PKD the Bump. This campaign unites patients, families and the public through the gesture of a fist-bump – representing the size of a healthy kidney and the symbol of the campaign. Friends, family and work colleagues are challenged to film, share, nominate and donate via social media using #BumpPKD.
Give PKD the Bump aims to raise awareness of PKD, and to generate funds for vital research and support services for people living with PKD – a progressive, incurable and life threatening inherited disease, which affects an estimated 12.5 million people worldwide. All proceeds from the Give PKD the Bump campaign will go towards improving the lives of those living with PKD. For example, research into biomarkers to develop a simple urine test to predict when PKD kidneys might fail or funding a Bio-resource Bank to contain cell, tissue and fluid samples of ADPKD and ARPKD for medical research.
PKD International spokesperson, Tess Harris said:
PKD is a devastating inherited disease, often described as a ticking time bomb, which has a profound and under-recognised impact on the lives of affected adults, children and families. I’m so proud to support the Give PKD the Bump challenge; something as simple as a fist bump signals not only solidarity but triumph too. With the help of the #BumpPKD, we hope to raise funds and awareness to create a world where everyone has healthy kidneys the size of their fist. The money we raise will help save lives. Together we can beat PKD.
PKD causes fluid filled sacs to develop throughout the kidneys, making them swell to up to four times their normal size (about the size of a rugby ball) and become up to 100 times heavier, causing patients a lifetime of pain, fatigue and kidney failure. Symptoms include high blood pressure, chronic stomach and back pain, kidney stones and blood in the urine. PKD may also affect the liver and some people are at increased risk of life-threatening brain aneurysms.
The most common type of PKD is autosomal dominant polycystic kidney disease (ADPKD) - caused by inheritance of a dominant PKD gene. Therefore, if someone has ADPKD, there’s a one in two chance of them passing it on to their children. ADPKD is the fourth cause of kidney failure worldwide with approximately half of people diagnosed requiring a kidney transplant or dialysis by the age of 54. The other type of PKD, autosomal recessive polycystic kidney disease (ARPKD), is expressed if a person inherits the ARPKD gene from both parents. The diagnosis of ARPKD can come as shock for parents since neither parent has experienced the symptoms of PKD before.
How can people support the campaign?
Through a social media challenge: Everyone and anyone can Give PKD the Bump, using just their smartphones and social media accounts. The aim of the challenge is simple: Grab a friend, film your fist bump, tag three other friends and pass it on using #BumpPKD
Donate: Once a #BumpPKD video has been created, text BUMP22 to 70070 or visit BumpPKD.com to donate online. Donations will be invaluable in achieving our goal, from funding vital medical research to developing diagnostic tools for patients and helping provide the support that PKD patients and their families need.
Wear a pin: Our exclusive ‘fist-shaped’ Give PKD the Bump pin can be purchased online for a small donation at BumpPKD.com. Wear it to show support for patients and commitment to funding research that will lead to a cure.
Go the extra mile: In addition to the social media challenge, people can support PKD patients by taking part in a nearby event, such as running for PKD or by holding a cake sale. More information and downloadable posters can be found at BumpPKD.com
Fist bump videos will be collected and celebrated online at: BumpPKD.com.
Living with PKD
From the Daily Mail, United Kingdom, By STEPHEN MATTHEWS
Rob Thomas was dianosed with polycystic kidney disease six years ago
The illness causes cysts and makes kidneys grow up to 4 times than normal
He has 25 per cent function and may need dialysis if his condition worsens
To make matters worse, his two daughters Ruby and Abby both have it
Rob Thomas, 44, from Pembroke Dock, Wales, was diagnosed with polycystic kidney disease - an illness which causes fluid-filled cysts to develop in the organs - six years ago.
It makes them swell up to four times their normal size and become up to 100 times heavier - causing pain, fatigue and eventually kidney failure.
Currently, he only has 25 per cent kidney function and may need dialysis within just two years if his condition worsens.
To make matters worse, it was discovered recently that his two young daughters Ruby, 10, and Abby, 6, have both inherited the condition.
His wife, Moira, has even offered one of her kidneys to him should he require a transplant.
“They ask, ‘Did you find a donor yet?’” she said.
Rocco, 52, has been on the kidney transplant list through IU Health since March. Her husband, Pete Rocco, is not a suitable match. Since her condition is hereditary, her immediate family members are not eligible.
“The kidney disease I have is an inherited disease (polycystic kidney), so it’s progressive,” Rocco said. “I’ve been fine up until October, and that’s when my kidney function started to fall, and that’s when they started doing testing and decided I needed to get a transplant.”
Rocco is trying to avoid having to undergo dialysis. She goes for blood tests every month.
“Every month my kidney function falls lower and lower,” Rocco said. “That’s why we’re hoping to find a living donor before I have to go on dialysis, because that will give me the best overall result and life expectancy. Once you go on dialysis, it’s three days a week and you are there six hours a day.”
That would make it hard for her to travel for work and to watch her son, Mike, a Zionsville Community High School senior, play baseball on the travel team. Mike is the couple’s only child together. Pete has three other children and Sandy has two others.
Rocco said there are more than 100,000 people nationwide on the kidney waiting list. At IU Health, the waiting list is 900. Rocco said the doctors say the wait is typically three to five years.
“Anyone can be a donor. It doesn’t have to be the same blood type that I am,” Rocco said. “There’s been a lot of advances with anti-rejection medicine.”
Rocco said her brother and sisters have the same disease, but they are not having any issues yet.
The family has started a Facebook page called “A Kidney for Sandy.” The first step for potential donors to take is to call IU Health at 317-944-4370 for an interview to determine eligibility. Pete said they have had some friends say they have called but were not eligible because of blood pressure, diabetes or something else.
“There are a lot of people that get ruled out immediately,” Pete said.
Pete has entered the paired donor program, where he might donate his kidney to another patient in exchange for the other patient finding a match for his wife.
Gift of Life
Kidney transplant co-workers doing well after surgery
A Hilltop Elementary School teacher and a co-worker who gave her a kidney are doing well after transplant surgery Thursday.
Wendy Wood, a special education paraprofessional at the Bonaire school, agreed to give a kidney to kindergarten teacher Shannon Grieshop even though they barely knew each other.
Wood’s husband, Jason, said Thursday afternoon that both were doing well after the surgery, although it did not go perfectly.
“There were some complications in getting the kidney to take in Ms. Shannon, but they got it figured out,” he said. “Everything is fine now.”
The surgery was performed at Emory University Hospital in Atlanta. Both women were in recovery, and he was expecting them to be moved to rooms soon.
Grieshop’s kidneys were failing as a result of polycystic kidney disease. After she put a letter in the mailbox of every staff member at the school letting them know of her plight, Wood responded that she was willing to donate a kidney. Tests showed that the two were a match.
As a show of support, students and staff on Thursday wore green, which is the color of kidney disease awareness.
Jason Wood said he “100 percent supported” his wife’s decision to donate the kidney.
“She just felt like God was putting it in her heart to do it,” he said. “We don’t second guess. We just go with it.”
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