PKD Australia

The PKD Foundation of Australia was established in 2014 to find
a cure for Polycystic Kidney Disease.

 

We will do this through:

Raising funds for research specifically to find a cure and for the treatment of PKD

Connecting and supporting Australians and their families affected by PKD

Providing education and information to people impacted by PKD

What is Polycystic Kidney Disease?

PKD affects between 5000 and 6000 Australians, and up to 6.5 million people globallyPolycystic kidney disease (PKD) is the most common inherited cystic kidney disease, which causes thousands of cysts (fluid filled sacs) to grow in the kidneys. The cysts grow gradually over time, enlarging the kidneys and making it harder for them to function properly. In Australia, PKD accounts for 6% of all people diagnosed with kidney failure. It affects people regardless of sex, age, race or ethnic origin.

There are two types of PKD

Autosomal Dominant PKD (ADPKD)

ADPKD is the ‘adult’ form of PKD and one of the most common genetic diseases. There is usually a family history of ADPKD with parents having a 50% chance of passing the disease on to each of their children. It does not skip a generation. Many of those affected may experience regular pain and high blood pressure while over half may develop kidney failure by the time they are 60 years old.

Autosomal Recessive PKD (ARPKD)

ARPKD is the ‘infantile’ form of PKD and a relatively rare form that is usually diagnosed at birth and affects approximately 1 in 20,000 individuals. It usually presents as enlarged kidneys with no family history of kidney disease. Boys and girls are affected equally however, both parents need to carry the gene defect for the child to inherit the disease.

Register Information

We are working towards building a community of people interested in PKD.

 

Would you like to be a part of this?

Commonly Asked Questions

How does a person get PKD?

ADPKD As PKD is an inherited disorder, the dominant form of the disease (ADPKD) is passed from one generation to the next by an affected parent. An ADPKD parent has a 50% chance of passing the faulty gene to each of their children. In some families, all the children are affected whilst in others none are. However, most people with ADPKD have a family history of the disease. ARPKD This recessive form of PKD requires a faulty gene from each parent for the disease to appear in a child. In most cases, there is no family history of the disease, and the parents do not have the disease themselves but are carriers.

How do I tell my family I have PKD?

How you talk about PKD with your family is a very personal decision. Each individual will approach it slightly differently depending on family dynamics. Several experts experienced with PKD suggest you share information with adult family members so they can make informed choices about their own lives and other medical issues. Discussions with children may be more complicated depending on the child’s age and their ability to handle and understand information about their own health and that of a family member with the disease.

How do I find out more about kidneys and kidney health?

Kidney Health Australia are a great resource for more information, check them out at kidney.org.au

Living with PKD

How will I feel living with PKD?

Most people with ADPKD lead normal and active lives until they have lost around 90% of kidney function. Although the kidneys continue to produce urine, because cysts have damaged the kidneys’ filtering units, the urine passed is largely water and salts. It does not contain the waste products, which should also be removed by the kidneys. An accumulation of waste products leads to a variety of symptoms, affecting a person’s health and well-being. As kidney function deteriorates, your doctor will prescribe medications and perhaps suggest some dietary changes to relieve these symptoms.

How often should I see my nephrologist?

As each person’s needs will vary depending on the degree of kidney dysfunction, you should check with your doctor about frequency of check-ups. Initially an annual check-up with your local doctor to monitor blood pressure is advised even if your kidney function is normal. If you have high blood pressure or abnormal renal function, it is important to see a doctor more frequently.

How can I prolong my kidney health?

Maintaining good overall health through diet, exercise, not smoking and controlling risk factors for cardiovascular disease including hypertension can all help prolong kidney health.

What can I do to slow or stop the progression of PKD?

There are several things you can do to try and reduce the risk of developing impaired kidney function:
    1. Control blood pressure. The current goal blood pressure for people with ADPKD is less than 130/80. It’s important to control blood pressure because high levels may further damage and scar the kidney and is also a risk factor for heart disease and stroke.
    • Control cardiovascular risk factors by maintaining a healthy diet, healthy body weight, exercising regularly and avoiding smoking.

 

    • Avoiding medications that may injure the kidneys. PKD patients are advised to avoid all Non Steroidal Anti Inflammatory Agents (NSAID’s) except in rare circumstances and under a doctor’s supervision.

What kind of medications should I avoid?

In general, you should avoid any medication that could harm your kidneys or affect your blood pressure. This includes Non-Steroidal Anti-inflammatory Agents.
    • Cold or allergy pills containing Sudafed.

 

    • Over-the-counter diet pills

 

    • Herbal supplements. These have not been studied for kidney disease and may be harmful for people with renal dysfunction. You should consult your doctor or nephrologist before taking any over-the-counter medications and supplements to help you assess the risks and benefits.

PKD and Exercise

Can I exercise if I have PKD?

Yes, exercise is important for cardiovascular health and is encouraged for people with PKD. Activities where kidneys might be hit accidentally include contact sports such as football, rugby and boxing. While there is no evidence these activities worsen renal function, they can result in blood appearing in the urine. It’s also important to remember to keep well hydrated when exercising.

Are sports dangerous to my kidneys?

In general, most sports do not affect kidney function. Contact sports where the kidneys may be traumatized (flank or lower-back impact) should either be avoided or protective pads worn. Examples include football, rugby, hockey and particularly boxing or kickboxing. Horseback riding and cross-country biking are other sports where repetitive impact has resulted in blood in the urine in people with ADPKD.

What are the best exercises for PKD patients?

Good exercises for people with PKD include sports where impact is minimized such as swimming, tennis, rowing, golf, biking and, to a lesser extent, jogging or running.

Contact Us

Please fill out the form below, or get in touch with us at info@pkdaustralia.org

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