For 36 years, I lived with an undiagnosed rare disease. Once diagnosed, you simultaneously have this sense of relief and a sense of worry. I have made a choice as to how I am going to live my life and that is not in fear. I will be the best possible role model that I can be for my children.
I hope that Canadians, if they’ve heard of a rare disease or if they know someone who has one, will ask a lot of questions, to try to understand and educate themselves on the rare disease that a loved one or a friend has, so they can be a better support to them and be more understanding.