The PKD Summit is an opportunity for the PKD medical community, renal healthcare professionals, PKD patients, their families and loved ones to hear presentations from top Canadian and International Key Opinion Leaders in the field of PKD.
MoreOnly a fraction of Canadians are registered donors. Depending on where you live, there are different ways to register and decide what you want to donate. While most Canadians consent to donate after death, it is also possible to donate organs while you're still alive.
MoreClinical trials are now exploring new treatment and management options for PKD. Check back soon to learn more about participating in clinical trials and recent research grants.
MoreA PKD diagnosis can be overwhelming, but there are many resources available. Learn more about your diagnosis, managing your PKD, common challenges and FAQs.
MoreThe PKD Foundation of Canada has a number of informative resources about polycystic kidney disease on our website.
MoreCOVID-19 is a serious health concern, and the impact on our lives continues to evolve. In these unprecedented times, individuals with pre-existing conditions need to be especially careful. It is our goal to provide you with up-to-date information as it relates to this virus, and to help ease your mind during this challenging time.
MoreHaving Your Donor Find YOU! is a comprehensive video series with graphics that educates patients about transplant and gives them the tools to mount a successful living donor campaign.
MoreIn partnership with BCRenal, we offer this comprehensive resource on the types of pain that can accompany polycystic kidney disease, and suggested strategies for managing pain associated with PKD.
MoreIf one person in a family has ADPKD, this means other family members may also have the condition; looking for family members who may also be affected is referred to as screening. Another option is genetic testing. Genetic tests can be done to determine if a person has one of these altered (mutated) genes that leads to PKD, and which mutation is present.
MoreIt’s natural to wonder how ADPKD can affect fertility and pregnancy. A common question among parents is whether their child(ren) will develop ADPKD, which is an inherited disease. Each child who has a parent with ADPKD has a 50% chance of also developing the condition.
MoreTAP provides programming for kidney patients and living donors, to get together to discuss the barriers to kidney transplantation and what could be done to overcome them. Transplant Ambassadors are kidney transplant recipients or living kidney donors who welcome the opportunity to share their personal experiences with you, to help guide you through your kidney journey.
MoreWelcome to PKD Mind Matters: Supporting Mental and Emotional Well-Being in the PKD Community
MoreYou’re here because you or someone you love has been diagnosed with polycystic kidney disease (PKD). Below, you can find some of the most frequently asked questions about an ADPKD or ARPKD diagnosis in a variety of categories, including living, nutrition and treatment options.
Autosomal dominant polycystic kidney disease (ADPKD) is one of the most common life-threatening genetic diseases, affecting approximately 1 in 400 to 1 in 1,000. It does not skip a generation. There is usually a family history of the disease and parents with ADPKD have a 50 percent chance of pass...
Keep ReadingADPKD is passed from one generation to the next by an affected parent. An ADPKD parent has a 50 percent chance of passing the PKD mutation to each of his/her children at conception. Scientists have also discovered that approximately 10 to 20 percent of the PKD patient community became affected th...
Keep ReadingEarly in the disease, patients often experience no symptoms. In fact, many people don’t realize they have ADPKD because they have so few, if any symptoms. Once symptoms develop, they include: High blood pressure or hypertension Chronic pain or heaviness Hematuria or blood in the urine Urinary...
Keep ReadingA cyst in the kidney begins as an out-pouching of the nephron (functional unit of the kidney) and can occur anywhere along the length of the nephron. Approximately 70 percent of cysts detach from the nephron when they are still small, about 2 mm (1/8 inch) in diameter. Over time, the cysts enlarg...
Keep ReadingThe kidneys are bean-shaped and about the size of a fist, located in the middle of the back, below the rib cage. They filter approximately 200 quarts of blood daily, reabsorb 98 percent of the filtrate and regulate the composition of the blood by removing waste and by other compounds.
Keep ReadingIn addition to kidney problems, other organs can be affected, including the liver, spleen, pancreas, vasculature, testes, seminal vesicles and intestines. A large percentage of people with ADPKD will develop liver cysts during their lifetime. Cardiovascular complications include high blood press...
Keep ReadingIf you’re living with polycystic kidney disease (PKD), you will want to take steps towards maintaining your quality of life – it is possible to continue living a happy, fulfilling life after diagnosis. One of the most common concerns for those living with PKD is chronic pain management; however t...
Keep ReadingMost people with PKD can continue to lead fulfilling careers after a diagnosis, and the decision to tell your employer about a PKD diagnosis can be a deeply personal one. Some considerations to factor into your decision may be whether you will need special accommodations at your work place, flexi...
Keep ReadingMen with autosomal dominant polycystic kidney disease (ADPKD) do not typically experience a decrease in fertility although ADPKD can be associated with cysts in the male reproductive tract. Defects in sperm function have also been associated with ADPKD. Men with ADPKD concerned about fertility is...
Keep ReadingWhen beginning a family, it’s important for both parents to understand that there’s a 50 percent chance that the baby will inherit PKD. It is possible to determine whether the fetus has PKD. Potential parents should also consider the following: Roughly 16 percent of people develop new onset hyp...
Keep ReadingPKD is not contagious. It is a genetic disease, which means you have it in your chromosomes.
Keep ReadingAccess to a Canadian genetic test site can be found at the DNA Testing Centres of Canada. Additionally, a list of genetic test sites around the world is available through the National Center for Biotechnology Information.
Keep ReadingStaying healthy is important when living with polycystic kidney disease (PKD), and you can take simple steps towards improving your nutrition and diet throughout a diagnosis. Dietary factors can play an important role in alleviating symptoms and slowing the progression toward renal failure. It is...
Keep ReadingAdequate daily fluid intake is a requirement and particularly important for those living with autosomal dominant polycystic kidney disease (ADPKD), as significant dehydration can occur during periods of heavy exercise or extreme heat. The type and amount of supplements and foods to consume varies...
Keep ReadingMaintaining a healthy weight is important for many reasons, including protection of kidney function. However, losing too much weight can cause other, possibly unintended complications. Consult your doctor before you take on any weight loss program.
Keep ReadingFor those living with ADPKD, there is no set formula for determining ideal body weight. This is partially due to the varying rate at which kidneys increase in size and weight and the effect of other complications caused by PKD. It is best to work with your doctor to determine an appropriate weigh...
Keep ReadingFor those with ADPKD who are otherwise healthy, moderate alcohol intake is acceptable, but consider limiting to two drinks per day for men and one drink per day for women.
Keep ReadingYes, exercise is important for cardiovascular health. In fact, participating in physical activity can help lower blood pressure, reduce stress, and generally enhance wellbeing in people living with PKD. Good exercises for people with ADPKD include sports where impact is minimized. These include s...
Keep ReadingThere is no cure for polycystic kidney disease (PKD), however there is a treatment option available in Canada that can help prevent cysts from enlarging and slow the decline of kidney function. JINARC (tolvaptan), a twice-daily oral medication, was approved by Health Canada in 2015 for the treatm...
Keep ReadingIf you don’t have high blood pressure and kidney function is normal: At least once per year If you have high blood pressure or kidney function isn’t normal: At least twice per year If you are approaching kidney failure: More frequently. Check with your doctor
Keep ReadingIf you are seen by a nephrologist on a regular basis, they will frequently request blood work. Your nephrologist will not only be looking at the creatinine level, but also how you are feeling (signs and symptoms) and other electrolyte imbalances. However, you may not experience any symptoms until...
Keep ReadingFatigue Poor appetite Nausea/vomiting Trouble concentrating (in severe cases, confusion) Dry, itchy skin, especially if phosphate is high Funny taste in your mouth; food tastes funny, metallic Muscle cramps at night Swelling in feet and ankles
Keep ReadingHigh blood pressure may further damage and scar the kidney. In general, you should avoid any medication that could harm your kidneys or affect your blood pressure. This includes: Nonsteroidal anti-inflammatory agents Cold or allergy pills with pseudoephedrine Over-the-counter diet pills Herbal ...
Keep ReadingDialysis is done by using a special fluid called dialysate. Dialysate is carefully controlled to pull wastes out of your blood without removing substances your body needs. There are two main types of kidney dialysis: Hemodialysis Peritoneal dialysis (PD)
Keep ReadingEnlarged kidneys typically prompt a test for autosomal recessive polycystic kidney disease (ARPKD). In some babies, a prenatal ultrasound can detect enlarged kidneys as early as 18 weeks after conception. Families may also hear the kidneys look “echogenic” (emitting echo signals) during an ultras...
Keep ReadingThe prognosis for children with ARPKD has improved dramatically over the last twenty years. Approximately 70 percent of newborns diagnosed with ARPKD survive the first month of life, and more than 85 percent survive to their tenth birthday. This is largely thanks to prenatal sonogram technology, ...
Keep ReadingKidneys: Once an infant with ARPKD survives the critical neonatal period, kidney failure becomes the next most prominent life threatening issue. Severely enlarged kidneys also further limit lung function by preventing adequate lung expansion. ARPKD affects both kidneys and the liver, so affecte...
Keep ReadingAlthough both PKD and cancer involve unregulated cell growth, there is no proven connection between the two diseases.
Keep ReadingPKD is not contagious. It is a genetic disease, which means you have it in your chromosomes.
Keep ReadingTo find a genetic clinic near you, visit the Canadian Association of Genetic Counsellor's website here.
Keep ReadingChildren with autosomal recessive polycystic kidney disease (ARPKD) can still live fulfilled lives, and maintaining a high quality of life can often be a top priority for parents and caregivers. Some of the most common challenges faced by children living with ARPKD include: Academic challenges...
Keep ReadingKnowing your child has been diagnosed with ARPKD can be very difficult. Sharing information is a very personal choice, and there are often many factors to consider. It can be helpful to answer questions in a simple, easy way, rather than providing an overwhelming amount of detail. The PKD Foundat...
Keep ReadingParents of a child with ARPKD have a 1 in 4 chance of conceiving another child with the disease, and a 1 in 2 chance of being a carrier of the disease. Carriers of the ARPKD gene typically do not experience any symptoms of the disease. Prenatal diagnosis of ARPKD is possible in at-risk families t...
Keep ReadingYes, children living with ARPKD can still participate in sports! Physical activity can help reduce blood pressure and generally improve one’s quality of life through socialization and play. Children can enjoy a wide variety of sports, including cycling, swimming and running in order to maintain p...
Keep ReadingChildren and families living with chronic illnesses need to have fun and build memories like all other families. The primary consideration when it comes to traveling is of course the stability of your child’s health. However, if your child is stable, there is no reason why you can’t travel! As wi...
Keep ReadingMany children’s hospitals typically have social workers assigned to kidney and liver patients that can help identify resources in your area and assist with the paperwork. Make sure to keep copies of all tests administered; many parents find it helpful to keep a large binder to organize records of...
Keep ReadingThrough a diagnosis of autosomal recessive polycystic kidney disease (ARPKD), adjustments may need to be made to ensure children are receiving the optimal amount of nutrients and vitamins to lead healthy lives. Dietary considerations play an important role in alleviating symptoms and slowing the ...
Keep ReadingAdequate daily fluid intake is an important part of staying hydrated for children living with ADPKD, especially during heavy exercise or extreme heat. The type and amount of supplements and foods to consume varies from person to person and it is always best to consult your doctor. Some parents ex...
Keep ReadingMany children living with autosomal recessive polycystic kidney disease (ARPKD) will eventually require a transplant. The majority will receive transplants between the ages of 4 to 10. It can be challenging for specialists to predict when a child will require a transplant, since the disease is d...
Keep ReadingDialysis removes waste products from the body but it cannot replace all of the functions of a normal kidney. People living with ARPKD typically will undergo dialysis before a transplant. To further supplement dialysis, some important hormones that the kidney produces can be taken by pill or injec...
Keep ReadingDialysis is done with a special fluid called dialysate. Dialysate is carefully controlled to pull wastes out of blood without removing the substances your body needs. There are two main types of kidney dialysis: Hemodialysis Peritoneal dialysis (PD)
Keep ReadingHealthy kidneys work 24 hours a day, 7 days a week. Despite great strides in medicine and dialysis treatment, this procedure replaces only a small amount of kidney function. If your child is not getting adequate dialysis, they may begin to have symptoms of kidney failure, such as: Metallic taste...
Keep ReadingThe decision to donate or receive an organ from a family member is a deeply personal one, and it is important to educate yourself about this decision, as there are many factors to consider. Testing of potential donors will typically occur under the direction of the transplant team and can begin w...
Keep ReadingDespite receiving transplants at a younger age, children with ARPKD experience similar survival as other kidney transplant patients. Transplant success rates are very good, and more than 85-90 percent of patients experience a successful transplant in the first year. Grafts also typically last the...
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