Caregiver, Mississauga, ON
My daughter, Brooke, was diagnosed with severe PAH in March 2014 at the age of 24. The day of her diagnosis, we scoured the Internet and found a lot of scary things. But we also found PHA Canada, PH Facebook groups, and the Toronto PH Support Group, which, until recently, met on a monthly basis. Members of that support group were lifesavers for my family; we knew we were not alone and there were people who had been diagnosed at a similar age as Brooke who were living with PH.
As a PHA Canada Ambassador, I would like to act as a lifeline, much like the one the Toronto PH Support Group provided my family and I, for newly diagnosed patients and their caregivers across the country. Because of Brooke’s situation, I especially want to reach out to young adults and teenagers diagnosed with PH and encourage them to share their stories.
In my role with PHA Canada, I also want to find innovative ways to inform our community of the tireless work the organization does on behalf of those who are affected by the disease, for example, by advocating for access to treatment. Personally, I started down the advocacy road in 2015 when I realized that there was a possibility that macitentan (Opsumit®) would not be approved for public funding. I thought at the time, that these things were slam-dunks. They aren’t. I now worry that new medicines may not be available to all PH patients. I want Brooke, and all PH patients, to have access to each and every drug available; I want Brooke’s doctors and other PH physicians to be able to make the decision as to what drugs will work for their patients. As a PHA Canada Ambassador, I will continue to advocate for these two things on behalf of all PH patients.