Top News

Polycystic Kidney Disease Awareness Day being held in Corner Brook today

Nina Young with a photo album filled with memories of her mother, Laura Rogers.
Nina Young with a photo album filled with memories of her mother, Laura Rogers. - Contributed

Nina Young of Corner Brook has been living with polycystic kidney disease since age 12.

More commonly known as PKD, polycystic kidney disease is a chronic, genetic disease that causes uncontrolled growth of cysts in the kidney, often leading to kidney failure.

Young’s mother Laura Young also suffered from PKD.

“At the age of 12 I was trying to deal with my mom getting sick. We were living in Kitchener, Ontario... I watched my mom for a very long time being really sick as her kidneys declined.”

By the time Young was 17, her mother was on dialysis.

“Mom went through over 150 surgeries in eight years. That included taking two of her kidneys out,” Young recalled.

Young was her mother’s main caregiver for the last two years of her life.

“The toxins started building up in her body and created brain damage. So she was unable to care for herself,” the 37-year-old recalled.

Young was a single parent with a toddler at the time she cared for her mom.

She was 21 years old when her mom passed away – eight years after starting renal replacement therapy.

“My mom was my best friend. Watching her go through so much and there is nothing you can do... I wanted to give her one of my kidneys but I couldn’t because I have the same disease,” Young said.

In addition to her mother’s death, Young has also lost five other relatives to the disease.  

Most died while waiting for a kidney transplant, she said.

“The hardest part for me was growing up and watching my family disappear in front of my eyes one by one. And to know this, as well, was probably my future...  I grew up with depression, in fear of not knowing what my future would hold.”

Two years after her mother’s death, Young moved to Corner Brook with her daughter to be closer to family.

Laura Young (named after her grandmother) is now 18.

She was diagnosed with PKD at age ten and has gotten great care over the years, her mother said.

While there is currently no cure for PKD, Laura will start a new drug called Tolvaptan to help slow the progression of the disease.

Young’s lifelong fear became her reality in 2016 when she had to start dialysis in order to stay alive.

 “Unfortunately, I have a lot of the same indicators that my mom did.”

Although her struggle with PKD has not been an easy one, Young believes her  deep faith will help her overcome whatever health issues she’ll face as she awaits a kidney transplant.

She also gets great support, she said, from members of her church – Humber United.

“My Christian faith has helped me through some very dark times... When I was in the intensive care unit it was only by the grace of God that I was able to pull through,” she said.

Young has been on the kidney transplant list for about two years and is doing everything she can to stay as healthy as possible.

“The wait list (for a kidney) is three-to-five years. I’m just hoping that my body will hold up until I get my transplant,” she said.

Young established a chapter of the Polycystic Kidney Disease Foundation of Canada in Corner Brook about nine years ago.

Since its creation in 1993, the PKD Foundation of Canada has raised more than $1 million towards research, support and help for families living with PKD.

Young reaches out to others living with PKD and provides educational material to doctors who treat patients with the disease.

Over the years, she has brought a tremendous amount of awareness about PKD to her community.

Thanks to her efforts, the City of Corner recently declared Sept. 4 as PKD Awareness Day. There will be a BBQ in the front of Western Memorial Regional Hospital from 11:00 am to 2:30 pm. Money made from the sale of hot dogs, burgers and raffle prizes are earmarked for the PKD Foundation of Canada.

“I cried when I heard (about the awareness day in Corner Brook). I couldn’t believe it was happening. The first thing I thought was this is for my mom, for all the other people who didn’t make it and for those still suffering,” Young said.

For more information on PKD visit the Foundation’s website at www.endpkd.ca.

For more information on organ and tissue donation call 1-709-777-6600 or toll free at 1-877-640-1110. Information can also be found online under the organ donation tab on Eastern Health’s website (www.easternhealth.ca).

COMMON SYMPTOMS OF PKD

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

Source: www.endpkd.ca

Recent Stories