DDO resident Luisa Miniaci-Di Leo, a volunteer Coordinator for the PKD Foundation of Canada-Montreal Chapter, has been raising awareness of polycystic kidney disease (PKD) since she lost her father to it in 2013. Miniaci-Di Leo also has PKD, and so does her 28-year-old son.
On September 22, more than 350 people are expected to participate in the annual 'Walk to End PKD' beginning at 10 am in Centennial Park DDO.
Participants are coming from Ste. Hyacinthe, Chateauguay, Kahnawake, Terrebonne, Rosemarie, Hudson, Ile Perot, Vaudreuil, Beaconsfield, Pointe Claire, and Quebec City. The official start ribbon will be cut by DDO mayor Alex Bottausci; MNA for Robert-Baldwin, Carlos Leitao; MP for Pierrefonds—Dollard, Frank Baylis, the Consul General of Italy, and heads of PKD Research at IRCM and Université de Montreal.
Miniaci-Di Leo stated that DDO's past and present Mayor Alex Bottausci has been wonderful in supporting their work and they have been blessed to have Frank Baylis support and participate in each one of their events.
“Like the name implies, a multitude of cysts form, grow, and multiply on each kidney. Each kidney goes from being the size of a fist, to each kidney becoming the size of a football weighing close to 30lbs,” writes Miniaci-Di Leo. “Unfortunately, the disease also affects the liver, pancreas, spleen, and gall bladder. With huge cyst-covered organs, women seem perpetually pregnant and men have the beer belly look. Naturally, as the cysts grow and multiply they will strangle kidney function bringing on kidney failure. If you're thinking that you never heard of this, well I was in your shoes when I got diagnosed at 35.”
This, she writes, is a genetic and hereditary disease that does not skip a generation. “My 28-year-old son is 4th generation in the family. I lost dad and my grandmother to PKD.”
Symptoms range from high blood pressure, repeated urinary tract infections, kidney infection, kidney stones, constant pain, bulging organs, blood in urine, cysts rupturing suddenly, and anemia. Research has discovered that PKD can also cause brain aneurysms.
Two important events are coming up.
Health Canada once again declared September 4 as National PKD Awareness Day and the Montreal Chapter will have its annual "Walk to END PKD" on September 22 in Centennial Park in DDO. “This year I have approached all the West Island Mayors as well as MNAs and MPs to help recognize September 4th. I have also approached cities/boroughs of the Greater Montreal Area. I have asked that they join DDO and other Canadian cities in officially recognizing September 4 in the form of a proclamation.”
Important landmarks went teal on that day, like the CN Tower, Niagara Falls, Toronto City Hall as well as Hamilton and Newmarket city buildings. “Last year no less than 20 cities and their mayors officially proclaimed Sept 4 as National PKD Awareness Day,” wrote Miniaci-Di Leo.
Having reached out to over 20 Mayors, MNA, MP, of the Greater Montreal Area and Quebec, I hope they will support PKD patients residing in their respective communities. As always Mayor Bottausci will once again recognize this day but several West Island patients hope their respective Mayors respond to the call as well.
There are 33 confirmed patients that are followed at the PKD Unit of Care at the Lakeshore General Hospital. This Unit was created due to the growing number of patients being diagnosed in the West Island population.
“The number I gave can easily quadruple-due to the hereditary factor each patient may have a parent, sibling, child, or grandchild which has PKD,” wrote Miniaci-Di Leo. “There are close to 200 patients being followed at the Glen Hospital, and over 100 at Maisonneuve Rosemont (largest dialysis center in Quebec). There are so many others that are affected, who don't even though they have it.”
PKD is the 4th leading cause of kidney failure after diabetes, and cancer. This unknown disease has strikes 1 in 500 globally and an estimated 66,000 are Canadians. Of that number, there's a possible 16,000 Quebecers living with PKD.
To learn more, please visit www.endpkd.ca
—Luisa Miniaci-Di Leo