From Toronto Metro, By: Lucie Edwardson
'My future is a little brighter': Patient happy with new kidney disease treatment plan
Britney Ambrose, who was diagnosed with PKD when she was 17, said prior to the new drug and treatment plan there was very little that could be done for people with PKD.
A new treatment plan for people suffering from polycystic kidney disease (PKD) is making life more bearable and slowing down the effects of the disease according to the Kidney Foundation.
Polycystic kidney disease is the most common form of inherited kidney disease. PKD causes progressive cysts on the kidneys, enlarging them slowly (sometimes to the size of a football), leading the patient to need dialysis until they must have their kidneys removed and undergo a transplant surgery.
Britney Ambrose, a 32-year-old archeologist, was diagnosed with PKD when she was 17, and said thanks to the new drug and a treatment plan developed by surveying kidney specialists and patients, her outlook on PKD has changed.
“My future looks a little brighter than it did before,” she said.
The drug, Tolvaptan (commonly referred to as Jinarc), prevents cysts from growing quickly by blocking receptors that helps reabsorb water, ultimately protecting kidney function.
The newly developed treatment plan—which had a Canada-wide consultation with patients and specialists— focuses on things like genetic testing, diagnostic imaging, predicting risk and drug treatment options.
This is a “big jump forward” for those living PKD, according to Dr. Louis Girard who co-authored the paper “Canadian Expert Consensus” detailing the treatment plan.
“Before we didn’t have a lot to offer for patients with PKD,” he said. “Now, for a proportion of them we have opportunity to try and delay the progression of kidney disease.”
Girard, who's also a clinical associate professor at the University of Calgary, said the new drug was an opportunity for doctors to look at the disease and see how they could provide better care.
“We weren’t doing a good service for our patients before and now we’ve published these consensus recommendations, and the new treatment is a small part of it but it made us look at how we could improve our care for our patients,” he said.
The doctor said the main message is that kidney specialists need to see those suffering from the disease so that they can apply what they’ve learned, and continue to understand how to better support those with PKD.
Girard said there are roughly 60,000 in Canada who suffer from PKD, and that so far the Tolvaptan and treatment plan has been made available to 700 people in the country, 20 of whom are in Calgary and 10 of which are Girard’s patients.
To read the full paper and recommendations for care click here.
Living with PKD
From Fox 17, West Michigan
Entire family fighting rare form of kidney disease
GRAND RAPIDS, Mich. - Imagine telling a child they can`t have chocolate or play certain sports because it could harm them. That's the life one West Michigan girl after she was born with a rare type of kidney disease - and shes not the only in her family diagnosed with it.
6-year-old Lorelai is a kindergartner who was born with Polycystic kidney disease which limits her on certain activities she can play and even what she eats like chocolate, bananas and oranges.
But she isn't the only one who suffers from this. Her brother Shane, her mother Danielle and even her siblings and father have kidney disease, too just not as severe.
"We all have the same disease we all worry about how it's going to affect us and we all try to share knowledge as we gain it," said Danielle Mier, Lorelai's mother.
Lorelai's kidney function is currently at 30 percent and as a result she takes six different medications twice a day on top of having has to check her blood pressure three times a day.
"It (the blood pressure cuff) just gives you a little of a hug (she laughs)," Lorelai said.
Plus she gets frequent blood draws, something her mom says is making her one strong fighter. Even more important, the family knows the importance of staying active.
"It helps your kidneys to keep working," Lorelai said.
That's why every year the Mier family walks in the Grand Rapids Kidney Walk to help raise awareness and money for research along with helping educate others on how to prevent it.
"For her to be around other people that have the same issues and are fighting the same battles every day it really is encouraging to her and it's encouraging to us as parents and her family to know there's other people there's other moms out there that are fighting for their kids," Mier said.
From Evening Times, Glasgow, Scotland
TWO childhood friends who say they as close as sisters have cemented their 45-year bond with a kidney swap.
Rodelle Kirk did not hesitate after her friend Maureen Graham's husband David put out a plea for help to find a donor on Facebook.
Maureen, 59, had waited nine years for her first kidney transplant, which failed a few years ago, and Rodelle, also 59, did not want her to face the same ordeal.
Miraculously, Rodelle, who is known as Del, was a perfect match for her friend even though only one in four of the population would have been suitable because she had developed very high levels of antibodies.
The emotionally charged moment the friends see each other for the first time after the surgery is captured on the final episode of the BBC series, Glasgow's Superhospital.
Del said: "We've been friends through thick and thin and for me to able to do this for Mo, well it's confirmation of how dearly I love her."
Maureen, who is from Balloch and is retired, has suffered from kidney disease for 29 years after being diagnosed with polycystic kidney disease at the age of 19.
She had her first kidney transplant at the age of 40, which lasted eight years before it began to fail and has spent 11 years in total on dialysis, latterly at her home.
Maureen said: "Del's like a sister to me. We've always been like that.
"I try not to get emotional about it but sometimes the enormity of it washes over me. There are no words. She's my hero, I cannot be more grateful.
"What you are doing is existing (on dialysis). It's not a life.
"I've not been this well for 20 years. I'd forgotten how this feels.
"Golf is my passion and I'm back playing."
Del, who lives in Dumfries, is now fully recovered after the surgery in November last year and is looking forward to celebrating with Maureen when she turns 60 on May 17.
She said: "For me to be a match was just incredible.
"If anyone was going to do it, I'd rather it was me.
"Maureen didn't want to put me through this. Her husband Dave put something on Facebook for her friends explaining Mo's situation and if whether anyone would consider putting themselves forward.
"That's what spurred me on. It was something I always hoped I would be able to do.
"This is the start of a new life for her."
The renal unit at the QEUH cares for more than 600 patients every year, who are on kidney dialysis.
With more than 5000 people on the UK transplant list and only 36% signed up to donate, patients can face considerable waits. Maureen has signed a petition calling for the Scottish Government to switch to an opt-out transplant system, which the Evening Times is campaigning for.
Del was warned by transplant surgeon David Kingsmore about the risks of donating a kidney and told that her system will take a "hard knock."
He said: "I've got a lot of admiration for people who do this. [Read more]
PKD Research
From The Lawrentian, Lawrence University
Dr. Lyman Gingerich earned her Ph.D. in genetics from the University of Wisconsin-Madison. She earned her undergraduate degree in biology at Kalamazoo College—a private, undergraduate institution similar in size to Lawrence in Kalamazoo, Mich. At Kalamazoo, Dr. Lyman Gingerich said, “I learned to ask questions, think broadly and develop a diverse skill set.” She went on to say, “Working in science requires so much more than simply having ‘good hands’ at the bench: you have to be able to communicate well, work with others who may have different perspectives or approaches and apply knowledge from diverse fields. One challenge for me was learning about lab culture and the different roles in a research lab. Because we had only undergraduates at Kalamazoo College, the opportunity to do research at an R1 university and interact with graduate students and post-docs before going to graduate school, was a key part of my success when I did pursue my doctorate.”
Polycystic kidney disease has symptoms that include the development of cysts in the kidneys and high blood pressure. It is considered a genetic disease as specific versions of inherited genes have been linked to this disease. Genes encode proteins that are needed for cellular functions. The versions of the genes in individuals who develop polycystic kidney disease encode altered proteins that affect these cellular functions, leading to the health problems associated with the disease.
Dr. Lyman Gingerich’s research focuses on how the versions of genes associated with polycystic kidney disease affect the function of cilia—a cell structure crucial to vision, heart, and kidney function in humans. Her lab uses nematode worms known as C. elegans, and fish known as zebrafish to identify these genes and study their effects.
Dr. Lyman Gingerich became interested in researching polycystic kidney disease after working with a lab studying polycystic kidney disease using C. elegans. When asked what she likes best about working with the nematodes and fish, Dr. Lyman Gingerich said, “I think that the variety of scientific questions that can be explored with C. elegans and zebrafish is amazing. I have to admit—I am still fascinated by watching a zebrafish embryo develop from a single cell into a complex organism.” Senior Brenna Ori, majoring in biology and history, commented that she was interested in the use of two different model organisms in Dr. Lyman Gingerich’s research on polycystic kidney disease.
One of Dr. Lyman Gingerich’s teaching interests is “inquiry-driven science education.” She said, “I enjoy the opportunity to mentor the next generation of scientists.” As an assistant professor of Biology at the University of Wisconsin-Eau Claire, Dr. Lyman Gingerich works with undergraduate students in her research lab. She said, “It is rewarding to see my students succeed, whether that be finding something novel in the lab, telling the story of their science at research conferences, or pursuing their passion after graduation (even when that passion isn’t science).” She continued, “Sometimes, it is hard to let students graduate—when students open new avenues for our research, I wish that they could stay in the lab.”
Ori commented that current science research presentations given at Lawrence help students understand “our own research as well as introduc[ing] us to new ideas and techniques we may not otherwise learn about.” Dr. Lyman Gingerich also commented on her own experience in attending research seminars as an undergraduate. She said that a speaker at a research seminar “sparked questions in my mind that started me on my path to becoming a trained scientist. It would be incredible if I could pay it forward.”
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