Britney Ambrose felt isolated and at times depressed after she was diagnosed with polycystic kidney disease (PKD) in university. The 32-year-old Calgary resident had experienced kidney problems in her teens, but was shocked to find out she was living with a chronic and potentially life-threatening illness. For many years she had no one to talk to about a condition that sapped her energy, and left her with so many questions about the future.
“Everybody kind of brushed it off as if it wasn’t important, so I was sort of led to believe that having PKD really wasn’t that important,” Ambrose says. “I didn’t have the support, no one to talk to. Since no one in my family has PKD, they don’t understand what it is.”
This summer Ambrose found a network of support close to home. The PKD Foundation of Canada launched a new Calgary chapter in July. The first meeting was emotional. For the first time ever, she sat down in the same room with people living with PKD, and heard their stories.
“It was like, I found a new family,” Ambrose says. She connected with another young woman living with PKD, and many others at different stages of the disease. “It was just nice to be able to talk to people and say, 'Oh, I get it. That is how it is.’”
Polycystic kidney disease strikes about one in 500 Canadians. It is usually, though not always, inherited. Cysts develop and damage kidneys and other internal organs. PKD can impact a person’s liver, spleen, pancreas, intestines, and testes. Symptoms include high blood pressure, chronic pain, infections, and kidney stones. The condition progresses at different rates and can lead to a need for medical management, dialysis or organ transplants – although there are eligibility requirements for each option.
“Every year is different,” explains Ambrose on her experiences with PKD. “I have had either more cysts, or bigger cysts, or less energy. I get back pain, and once in a while I get a kidney infection.”
The PKD Foundation of Canada has set up chapters in many parts of the country, from Vancouver to Newfoundland, so people living with the effects of the disease can find help nearby. The Calgary initiative is part of a plan for growth that included the launch of a new chapter in Edmonton in August, and Winnipeg and Halifax in the months ahead. Along with peer support, meetings feature a variety of speakers, from nephrologists, to renal dieticians, dialysis nurses, and transplant coordinators.
“When you are newly diagnosed, it can be lonely and devastating,” notes Jeff Robertson, Executive Director of the PKD Foundation of Canada. “To talk with someone who has been living with PKD, and advocating for it, can bring peace of mind and a sense of community that is so valuable.”
Robertson is the driving force behind the Foundation’s expansion across the country. As a child growing up in Ontario, he watched his mother Jan cope with the effects of PKD with very few resources and peer connections. The PKD Foundation of Canada grew out of his mother’s determination to bring Canadians with PKD together, and fight the disease as a community.
The Foundation has also worked to bring about National PKD Awareness Day, coming up on September 4th. Since 2014, it has been recognized by Health Canada and by mayors across the country. The day will be marked with a range of activities and events in different communities across the country. It has also expanded recently to become a global event, with the U.S. and several European countries also recognizing National PKD Awareness Day on September 4th.
Back in Calgary, Ambrose hopes to volunteer at the new chapter, and continue to attend upcoming meetings and educational events. She isn’t sure what lies ahead, but knows that in the future she won’t face her struggles alone.
“It is comforting,” Ambrose reflects. “Having the Foundation, and being able to connect with someone who understands, and just being able to talk about it, is very therapeutic. I find relief knowing other people are going through similar things.”
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