Get informed and help raise funds at the 2017 Walk to END PKD

PHOTO COURTESY LUISA MINIACI-DI LEO

MUHC doctors and personnel taking part in the PKD Foundation of Canada Montreal chapter's annual Walk to END PKD.

You could say Dollard-des-Ormeaux resident Luisa Miniaci-Di Leo devotes her life volunteering to raise public awareness about polycystic kidney disease (PKD), one of the most common life-threatening genetic diseases, affecting about 1 in 500 people worldwide.

In 2014 Miniaci-Di Leo started the Montreal chapter of the PKD Foundation of Canada which, on September 17, is holding its 2017 Walk to END PKD. She's looking for sponsors (sponsor names will appear on the walk's T-shirts) and participants to help raise awareness and funds for critical Canadian research on PKD.

Diagnosis a surprise

“The reason I started the chapter is I'm directly affected,” Miniaci-Di Leo explained. “I discovered I had PKD at the age of 33 while doctors were investigating to figure out another problem,” recalled Miniaci-Di Leo, who is now 60. “I had miscarried four times and after I finally had my kids, the doctor, a high-risk (obstetrician/gynecologist), said we have to find out why this happened.”

Miniaci-Di Leo underwent CT scans and MRIs, and doctors did genetic testing, not only on her but also on her husband. They sat the couple down and asked Miniaci-Di Leo which of her parents has PKD.

“I'd never heard of this,” Miniaci-Di Leo told doctors, adding, “No, nobody has PKD! By the way, what's PKD?” The doctors insisted a parent definitely had polycystic kidneys, “in genetics we don't make a mistake.”

She told her parents about the diagnosis and that they both needed to do a simple ultrasound to find out if they too had cysts on their kidneys. “My mother being of the old Italian generation, (said) 'oh, no, what are you talking about?” and was skeptical.

“I'm not sick,” Miniaci-Di Leo's father told her. “Lo and behold, I opened a Pandora's Box because my father got diagnosed positively with PKD, his sister, my cousin and a whole bunch of other people on my dad's side of the family.”

“It was determined I got this on my dad's side,” she explained. “My grandmother, when she passed away in '62, they told us that she had tumours on the liver. When someone gets told tumours on the liver, cancer, right? Well because PKD is something that doesn't only affect your kidneys, you also develop cysts on your liver, your pancreas, and your gallbladder.”

PKD not always recognized

When Miniaci-Di Leo's dad was diagnosed with PKD at the age of 60, his only symptom was high blood pressure, a symptom of PKD which she said in her father's case was improperly diagnosed. Before her own diagnosis, she said her doctor didn't recognize her repeated urinary tract infections (UTIs), kidney infections and ruptured cysts as signs of PKD even when she experienced six UTIs and a several kidney infections in one year and was suffering pain similar to appendicitis. At a hospital, ruptured cysts on her kidneys were determined to be a cyst on her ovary. "They didn't check."

Though there are PKD care units at MUHC hospitals including the Lakeshore General, Montreal General, Royal Victoria and Montreal Children's, Miniaci-Di Leo says too often people living with PKD don't realize they have it. "I've met so many people with PKD whose stories are similar to mine,” describing people who not only suffered UTIs and kidney infections, they also had kidney stones. Miniaci-Di Leo said people need to push for referrals to specialists so they get a proper diagnosis.

Because the cysts can form and multiply on kidneys, each kidney can change in size from a fist to a 30-lb football. Cysts can also grow on the liver, pancreas and gall bladder, so men living with PKD may seem to have beer bellies, while women may look perpetually pregnant. There is no cure. Approximately 50 percent of people with PKD develop kidney failure or end-stage renal disease and their only treatment options are dialysis or a kidney transplant.

Because PKD is hereditary, if one parent has it they have a 50/50 chance of passing it down to each of their children. One rare form of PKD, called Autosomal Recessive Polycystic Kidney Disease, can cause newborn death. The disease affects 66,000 Canadians and approximately 12.5 million people worldwide. Health Canada recognizes September 4 as National PKD Awareness Day and thanks to Miniaci-Di Leo’s efforts, DDO Mayor Ed Janiszewski officially recognizes the day.

The PKD Foundation of Canada Montreal Chapter's 2017 Walk to END PKD is taking place Sunday, September 17, at 10 a.m at Dollard-des-Ormeaux Park. Get a team together and register online to collect pledges at www.endpkd.ca

For more information, look for PKD Foundation of Canada - Montreal Chapter on Facebook or call Luisa Miniaci-Di Leo, Montreal Chapter and Walk Coordinator for the PKD Foundation of Canada at (514) 501-9924 or email montrealchapter@endpkd.ca

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