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Living with PKD

If you or a loved one has recently been diagnosed with polycystic kidney disease (PKD), you likely have many questions about the disease and next steps. Know that it is possible to live a happy, fulfilling life with PKD. 

There are two different types of PKD – ADPKD and ARPKD. The difference between the two is genetic – this means it is passed down through the family, rather than contracted or developed. 

Autosomal dominant polycystic kidney disease (ADPKD) is one of the most common life-threatening genetic diseases, affecting approximately 1 in 500. There is usually a family history of the disease and parents with ADPKD have a 50 percent chance of passing the disease on to each of their children, and it does not skip a generation. Certain patients with ADPKD will require a transplant over the course of their life, but treatment is available for some. Many patients living with ADPKD can live with the disease symptom-free for many years before requiring additional medical care.

Autosomal recessive polycystic kidney disease (ARPKD) is a more rare genetic disorder, occurring in approximately 1 in 20,000 individuals. It affects boys and girls equally and often causes mortality in the first month of life. Most children living with ARPKD will require a transplant early on, between the ages of 4 and 10 years old. In some cases, symptoms of ARPKD do not appear until later on in childhood or even into adolescent years.

In both forms, some of the most common symptoms include:

  • High blood pressure
  • Back or side pain
  • Headache
  • Increase in the size of your abdomen
  • Blood in your urine
  • Frequent urination
  • Kidney stones
  • Kidney failure
  • Urinary tract or kidney infections

There may be some adjustments you need to make following a PKD diagnosis, either for yourself or your loved one. Prolonging optimal kidney health is a priority for all those living with PKD, as is maintaining a high quality of life throughout diagnosis and treatment. You should first strive to maintain good overall health through diet, exercise, and controlling risk factors for cardiovascular disease, including hypertension, which is very common for those living with PKD. To learn more about some of the most commonly asked questions related to both forms of PKD, check out our FAQ’s.

If you have children, the question of whether or not to be tested or to have them tested for PKD before symptoms appear is a difficult and personal one. If you are aware of a history of PKD in your family, you may also consider getting yourself tested. Once a diagnosis is confirmed by imaging or genetic testing, it becomes part of an individual’s health records. 

You can find out more about genetic testing here: http://dnatestingcanada.com/