From PKDClinic.org, a Doctor answers questions
Newly Diagnosed with PKD
PKD is a genetic kidney problem. Although it is passed down from generation to generation, but there is indeed such a case in which people who have no PKD family history is diagnosed with this problem. Besides, PKD is easily confused with multiple kidney cyst, so I suggest you to make clear your wife is suffering from PKD or multiple kidney cyst.
From PKDClinic.org
Polycystic Kidney Disease is an inherited kidney problem, but for people with parents suffering from this genetic kidney disease, how do they know if they have Polycystic Kidney Disease? In clinic, the following tests will help to diagnose this genetic kidney disease.
From KidneyABC.com
Polycystic kidney disease is a progressive kidney disorder. It can be divided into five stages.Corresponding treatment is needed in different stages.
From PKDClinic.org
Can PKD (Polycystic Kidney Disease) skip generation? As for this question, the answer depends on the exact type of PKD. Clinicaly, PKD is mainly divided into two types: ARPKD (Autosomal Recessive Polycystic Kidney Disease) and ADPKD (Autosomal Dominant Polycystic Kidney Disease).
From PKDCure.org, the PKD Foundation
Ask The Doctor About Tissue Donation
Discarded human tissue is an invaluable research tool. Polycystic kidneys retrieved for research at the time of nephrectomy (surgical removal of non-functioning kidneys) provide an opportunity for scientists to study the cells and tissues that harbor the genetic mutations responsible for cyst formation. The PKD tissue retrieval program offered through the PKD Foundation provides patients or their families with an avenue to contribute to the advancement of our understanding of PKD. The PKD Foundation coordinates donations of discarded human PKD kidneys to research labs across the country. Since January 2012, the PKD Foundation has contacted PKD investigators on behalf of 18 PKD patients for potential kidney donations. This program has been ongoing since 2003, with approximately $5,000-$10,000 invested each year ($100,000 total).
Welcome back to the 7th post of PKD News Blog. Each week I find and post relevant news for the PKD community. Here we are in the last few days of April in the National Donate Life Month. Individuals and families continue to struggle with this chronic kidney disease. Please make a contribution to help ongoing research to find a cure. You can make a contribution to the PKD Foundation at PKDcure.org Read the news and Pass it on.
Individuals and Families
From the Kingston Herald, Canada
Kingston Girl Seeks Kidney Donor During Awareness Week
Olivia Trecartin’s Facebook page features pictures of an adorable brunette toddler with chubby cheeks and big blue eyes. Unlike most moms, however, Olivia’s page is completely open to the public. Her daughter Ava needs a kidney. “Ava was diagnosed at 30 weeks with having Autosomal Polycystic Kidney Disease, ARPKD.
From DailyStrength.org, a PKD Support Group
I have felt Alone in My battle for so Long
My name is Angie, I am almost 37 and was diagnosed 10 years ago with APKD . I have had symptoms for much longer. I have not met anyone with PKD and my friends and family knew so little about it. We have not even found a link in our family for it. I have felt very alone in my battle.
From Reddit.com, I Am A... discussion thread
IamA 18 yr old female with Polycystic Kidney Disease. Ama.
A lot of people don't actually know what this disease is, but as you can guess by the name. Its a kidney disease where your kidneys are twice the size as a average kidney and covered in cysts. I've seen a few posts about PKD before on reddit, and there were a lot of questions unanswered. So i thought i would make this thread and answer anyone's questions! :) Ask me anything!
From PKD Will Not Beat Me.com by Valen Keefer
The Colors of Hope
I put the finishing touches on my festive Donate Life outfit as I put on my big blue and green earrings in preparation for an interview with the Auburn Journal. I was wearing a frilly green tank top, blue scarf, white jeans and green and blue platforms. Although I was not feeling my normal spunky self because of my herniated disks, it felt good to do my hair, put make-up on and be wearing this bright and cheery outfit. This clothing and these colors brought back wonderful memories from April 2012.
Living With PKD, Foods and More
From Kidney-Support.org
Low-Phosphorus Food for PKD Patients
A reasonable diet is usually suggested by doctors for PKD patients, while low-phosphorus food will be included when the phosphorus level is found higher than the normal level. There are many tasty, lower phosphorus food options that can help PKD patients be as healthy as possible.
From PKDClinic.org
For people with Polycystic Kidney Disease, dietary strategies play an important role in easing their symptoms and slowing the growth of kidney cysts. Learn how to make a holistic diet for PKD that is suitable for yourself. Here are a few tips to get you started.
From PKDClinic.org
Can People with Polycystic Kidney Disease Eat Ginseng
Ginseng is made from the gnarly root of the ginseng plant. Some patients use it to fight against their disease. Because it has many healthy benefits, many PKD patients also want to know the answer of the question-can people with Polycystic Kidney Disease eat ginseng.
From BioScienceTechnology.com
Researchers at King’s College London’s Dental Institute have shown that people with a certain kind of kidney disease have characteristic facial features that may reflect the genetic mutation they carry. ... To the naked eye, patients with ADPKD are not known to have any characteristic facial or dental features.
From PKDClinic.org
People with Polycystic Kidney Disease have a high incidence of aneurysm especially intracranial aneurysm, which is one leading cause of PKD patients’ death in the early stage. Therefore, to prevent and control aneurysm is fairly important for these patients.
Treatment
From Wiley Online Library, British Journal of Pharmacology
Autosomal dominant polycystic kidney disease (ADPKD) is the most common inherited kidney disease and results from mutations inPKD1 or PKD2. Cyst initiation and expansion arise from a combination of abnormal cell proliferation, fluid secretion, extracellular matrix defects and results in kidney enlargement and interstitial fibrosis. Since its first descriptions over 200 years ago, ADPKD has been considered an untreatable condition and its management limited to blood pressure reduction and symptomatic treatment of disease complications. Results of the recently reported TEMPO 3/4 trial thus represent a paradigm shift in demonstrating for the first time that cystic disease and loss of renal function can be slowed in humans. In this paper, we review the major therapeutic strategies currently being explored in ADPKD including a range of novel approaches in preclinical models. It is anticipated that the clinical management of ADPKD will undergo a revolution in the next decade with the translation of new treatments into routine clinical use.
From PKDClinic. org
Many people with Polycystic Kidney Disease prefer to use traditional Chinese medicine to control their condition, because these medicines, compared with western medicine, have fewer side effects. However, what traditional Chinese medicine can help treat Polycystic Kidney Disease? How do these herbal medicines work?
From U.S. National Library of Medicine, National Institutes of Health
Improved neonatal medical care and renal replacement technology have improved the long-term survival of patients with ARPKD. Ten-yr survival of those surviving the first year of life is reported to be 82% and is continuing to improve further. However, despite increases in overall survival and improved treatment of systemic hypertension and other complications of their renal disease, nearly 50% of survivors will develop ESRD within the first decade of life.
From The Guardian, Nigeria
Natural remedies for kidney damage
In recent times many Nigerians have been coming down with kidney failure needing regular dialysis and kidney transplant, with their attendant very high costs, to live. The increase in end stage renal disease or kidney damage has been blamed on fake, substandard and adulterated drugs and food products, pesticides and insecticides to mention but a few. However, researchers have identified how to prevent kidney damage with vegetables such as beetroot, cucumber, scent leaf/basil, lettuce, ginger, and watermelon among others. CHUKWUMA MUANYA writes.
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