By Colleen Schnell
I was born in Niagara Falls, N.Y., in September 1975. When I was 9 months old, I was diagnosed with a complex congenital heart defect. By that time, I had already developed pulmonary arterial hypertension.
I was always the sick kid, the one who couldn’t do much because of my symptoms. I never fully understood what having pulmonary hypertension (PH) meant because we were so focused on my heart as I grew up. That changed in my mid-20s when my PH symptoms got progressively worse and I needed to seek better treatment. After I started on medication to treat PH in 2003, I found the Pulmonary Hypertension Association (PHA) community.
I spent several weeks reading the PHA message boards that were available at the time, crying often because I couldn’t believe there were others living like me. I also began frequenting the PHA chat rooms, which were wonderful, because I could talk to others like me in real time.
I led chat room sessions a few times a week for many years. I also became a PHA mentor and helped many people on the beginning of their PH journeys with resources and what I hope were words of encouragement.
When I was approached about starting a support group in my area, it seemed extremely daunting and nerve-wracking. I had had a brief stint as a preschool teacher and could easily deal with little kids, but adults? No way! However, I thought and prayed about it for days, and eventually decided I needed to take on the challenge. The closest support group to me was more than three hours away, so why not start one here in western New York? We started the Buffalo-Niagara PHriends Support Group in 2005.
Fifteen years later, I still love leading this support group. Meetings start in April every year and occur every other month until December. The group includes about 10 to 15 regularly attending PH patients and supportive caregivers or friends. We have covered many topics, but some of the best meetings are those where we just sit and talk about whatever is on our minds.
At least once a year, someone newly diagnosed calls to find out more about the group, and it makes my heart happy to know that I founded a group to support them. I am constantly inspired by people brave enough to want to know more about this support group and PH, because I didn’t have that opportunity when I was growing up with this disease.
The most rewarding part of being a leader are the “thank yous” I get after almost every meeting, and I hope I will be able to keep providing the support these PHers need for many years to come.