Imagine, if you will, being the parents of a sick child, a child who can’t breathe or digest their food properly. Imagine being told that your child has cystic fibrosis and most likely won’t make it to their fourth birthday. This is what it was like back in 1964 when I was diagnosed with CF.
My name is Brenda Chambers-Ivey. I am a 52-year-old CF adult, a double lung transplant recipient (2003), daughter, sister, wife, step-mom, friend, and CF volunteer/advocate for over forty years. I live in Northwestern Ontario, near the Manitoba border. This has given me the unique opportunity to be affiliated with two CF chapters—Winnipeg and Thunder Bay. I’ve been married to my husband John for 19 years and have two step sons, many amazing friends and family, and work full time in Academic Services at our local college.
As a child with CF, I was truly blessed to have parents who did not give up when faced with this insidious disease. They carried on doing what they had to do (daily physio, nebulizer treatments, hiding pills in food), and instilled that same positive attitude that has helped me reach many milestones in my life. I have a post-secondary education, a career, I own my home, I’m married with step children, and passing the 50-year milestone! CF is something I have, but it does not have me! Many have said that I am an eternal optimist who always seems to find that silver lining.
I have turned CF into an opportunity to be involved in the community, fundraise, help others and, by default, help myself. I have been involved in radio and TV appearances, speaking engagements and a public service announcement for Transplant Manitoba. I was an initial member of the Adult CF committee (Manitoba representative), the Manitoba Adult CF group, a member of KIN Canada and more. My goal was to raise awareness of CF, the need for lung transplants and the many young people we lose to CF. Having been involved in many CF-related activities over the years gave me the opportunity to meet other amazing CF individuals. Wonderful friendships were formed and over the years we helped each other deal with the disease. Unfortunately, most of these friends have now passed on. I have so many amazing memories of these CF fighters and how they gave so much of themselves to raise awareness of CF. I am humbled to have known them and to help carry on what we started.
I am currently a member of the Adult Cystic Fibrosis Advisory Committee and I look forward to being involved in more opportunities with Cystic Fibrosis Canada in the future, and sharing the amazing experiences that having CF has given me.