From primary care to complex conditions, we offer hundreds of specialists. Our board-certified nephrologists have extensive experience with PKD. In our weekly specialty clinic, these specialists work closely with you to accurately diagnose, correctly stage and actively monitor the progression of PKD. Our PKD clinic has regular openings. Physicians may refer patients, and patients may self-refer by calling Our multidisciplinary dialysis team includes physicians, registered nurses, dietitians and social workers to provide education and support, and to help you manage your condition and maximize your quality of life.
I would want to tell other people who have been diagnosed with polycystic kidney disease that it's definitely not a death sentence, so there's a lot of options, a lot of education available, a lot of good doctors and nurses who definitely know a lot about polycystic kidney disease.
The University of Kansas Hospital has helped me through my healthcare journey with having polycystic kidney disease immensely. First of all, I got established with nephrologists there. I have been enrolled in some polycystic kidney disease studies and the research studies have felt so empowered by being able to participate in those studies.
Franz Winklhofer: My name is Franz Winklhofer. I'm a nephrologist with an interest in polycystic kidney disease. I'll see a lot of patients with very early stage kidney disease, especially polycystic kidney disease, but I take care of patients on dialysis as well. Polycystic kidney disease or PKD is a genetic disorder. It's the most common, potentially fatal genetic disorder.
Affected patients will over time develop cysts in the kidneys and they can develop so many cysts that the good kidney tissue is essentially replaced or destroyed and then that leads to the chronic kidney disease and kidney failure.
At this time, the treatment or potential treatments for PKD are very limited. The treatment at this point is really focused on trying to limit other risk factors that we know can lead to progression of kidney disease or kidney injury. We started the PKD clinic here a number of years ago because of the just broad range of expertise that we had both in the clinicians as well as the basic scientists who have a strong research interest in PKD. We see, again, patients in all stages of the disease.
The PKD clinic here offers the ability to, first of all, diagnose the disease. We can also give information about prognosis and then obviously we're focused on trying to treat the disease as best we can. We can offer further consultation with other specialists to help interpret some of the results. There's also access to clinical trials. Our program is unique in this area because there, to my knowledge, isn't another clinic that's solely dedicated to PKD patients only. The other thing is that we have not just clinicians but we have researchers that have PKD as their sole focus.
We have a wide range of diagnostic imaging that we can use to help clarify the diagnosis. Sometimes we are referred patients who've been diagnosed with PKD and we find out that it's something completely different as well. So I think the just the close focus on polycystic kidney disease and the progression of the disease and the complications are something that we're, I think particularly well equipped to deal with.
Jennifer Branch: I feel like I'm at the best place that I possibly can be with polycystic kidney disease. I like to share my journey with other people. People can live a very long, healthy life with kidney disease. It is definitely something that you can work with people who are very caring, very knowledgeable and very invested in kidney disease and helping people like myself. They're so close to identifying all the genes responsible and coming up with medications and treatments that can help people with polycystic kidney disease.
There are numerous other targets that potential therapies may become available for. Published on February 12, Observed every February 14th, National Donor Day is dedicated to spreading awareness and education about organ, eye, and tissue donation. Recounting his kidney donation journey, Rick Adams shares what it was like becoming a kidney donor to his daughter.
The resources, information, and support provided by the PKD Foundation were exactly what we needed. They provided us with the support to make knowledgeable decisions concerning the health and care of our daughter.
We now had a personal stake in finding a cure for PKD. We wanted to do more to support the PKD Foundation and knew the best way was through fundraising. It was through the local chapter that we met an amazing group of people afflicted with PKD and who were advocates for finding a cure. By the time Elizabeth was 23, she was in end-stage renal failure. Our eldest daughter, Berkeley, and I were proactively tested to determine if we were a good match for donation. Fortunately, we both were deemed to be suitable donors and it was decided that I would donate first.
I intuitively knew I would be a donor match and had prepared for the moment. Beyond the antigen match, which determined I was a suitable donor, I went through a series of noninvasive tests, including blood draws, a heart screening, and various scans.
One, he was awful at titles — at least, marquee-friendly titles. Blade Runner an aside; the forthcoming film Blade Runner , while not based directly on a PKD work, is eagerly awaited for continuing the story of Deckard, played in the original by Harrison Ford was called in its novel form Do Androids Dream of Electric Sheep? There will be protests from the self-confessed Dickheads who adore him and, personally, I think the criticism is a little unfair.
His UK publisher Gollancz has republished the Electric Dreams stories in an anthology with introductions by the writers who have brought them to TV. This is typical: Blade Runner , Total Recall , Minority Report … they all have at their heart the original concept from the source material, but PKD adaptations that slavishly follow the text are rare.
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