I was given the gift of a speedy diagnosis and would like to pay it forward by raising awareness about rare conditions through advocacy work. I strongly encourage others who face health issues to get them checked out right away. Keep advocating for your health, ask for help and don’t stop searching for answers — your body will thank you for it in the long run.
Secondly, my lifelong dream of becoming a mother finally came true. After years of being on a wait-list to adopt a child, my husband and I decided to explore surrogacy. Thanks to the team at the Ottawa Fertility Centre and a surrogate we found through Facebook, my husband and I had our first child in 2022.
Finally, I am alive today thanks to the expert care provided by my medical team and the love and support from my family and friends. I had to fight for access to treatments that weren’t yet funded by the government formulary, but eventually, thanks to Ontario’s exceptional access program, I am on several treatments that have helped slow down the progression of my disease.
But PAH is a lethal disease and there is a huge need for new treatments. Earlier diagnosis and timely access to new therapies are key to delaying disease progression and reducing hospitalizations. I know I am not alone in these challenges — there are more than three million Canadians living with rare conditions, many of whom are also fighting for their lives.
