At the time his son was born, Arie Pekar was starting a life on dialysis, which he was then on for three hours, three times a week. Arie was worried he wouldn’t be healthy enough to experience his son growing up.
Arie has a disease called autosomal dominant polycystic kidney disease (ADPKD) that causes cysts to develop on kidneys and can lead to an increase in total kidney volume (TKV), resulting in very painful, irreversible damage. As cysts on the kidneys develop and the kidneys grow, other organs may become affected.
Growing up with a mom with ADPKD, Arie had a 50 per cent chance of inheriting the condition. He knew that one of the early symptoms of the condition is hypertension and monitored his blood pressure regularly at home from a young age. When he came home from university one weekend and had high blood pressure, he immediately went to the doctor. Being at risk for the disease, his physician conducted an ultrasound, confirming the diagnosis.
At a faster–than–normal rate, Arie’s kidneys declined and were functioning below 10 per cent. He was immediately put on dialysis and told he would need a transplant in order to feel healthy again. Two years ago, in an effort to find a new kidney, Arie’s wife, Joy, started a Facebook campaign called “Mom and Me Need a Kidney.” Several family, friends and strangers came forward, finding only one suitable match – a long-time friend who agreed to donate his kidney.
In Canada, treatment is available for patients like Arie help to manage the symptoms associated with ADPKD, such as high blood pressure and pain, however there are no approved medications available that slow the progression of the disease. When individuals with ADPKD develop renal failure, the only options available are to undergo dialysis or transplant, which can be costly and invasive. As was the case with Arie, transplant is only possible if a suitable donor is found, which can take years.
“Since I have a parent who has ADPKD, I knew I was at a high risk of getting it too,” says Arie. “My advice to other families – especially those who aren’t familiar with ADPKD – is to educate yourself and know your options. Reach out to other families who are in a similar situation and speak to your doctor.”
ADPKD can run in a family for generations, and some individuals have lost family members who didn’t even know they had the disease, yet died from eventual kidney failure. Once individuals with ADPKD are at risk for kidney failure, they will have to remain on dialysis for the rest of their life until they get a kidney transplant and will often need additional organs transplanted as well.
It’s important that Canadians know their family history, understand their risk of inheriting ADPKD and speak to their doctors for a proper diagnosis. For more information about ADPKD and to connect with others living with the disease, visit www.endPKD.ca.
This is a sponsored post, which means it was paid for by our advertising partners. Learn more about Otsuka Canada Pharmaceutical Inc. at www.otsuka.com/en/.