Janessa Curnow, 34, is a Pulmonary Hypertension Association (PHA) support group leader from Grand Rapids, Michigan. She worked in finance until 2013 when she was diagnosed with pulmonary arterial hypertension (PAH). She has volunteered for PHA’s Generation Hope programs since 2018.

By Janessa Curnow

I am a young adult with pulmonary hypertension (PH). Though I live alone, I am supported by my two older brothers, sister-in-law, nieces, nephew and close friends. All these people have shown that family is more than who you’re born to; it’s who shows up in good and difficult times.

When I was diagnosed, the staff at my PH clinic immediately asked me to start a support group. There were none in my area.

I declined because I needed to work through some things on my own before I could help others. After having been in groups for other issues, I had found real purpose in supporting others.

When I was finally ready to support people, it would be my PH community. I wanted others to have a place to turn to because I had felt so alone when I was diagnosed. There wasn’t a place nearby to reach out and connect. I also wanted to be able to walk alongside other patients in their journeys. In 2017, I started a Facebook-only group for people with PH in my hometown.

In 2018, I went to PHA’s International PH Conference and Scientific Sessions. I saw the many amazing ways that PHA supports its volunteers, so I decided to become an official PHA support group leader.

I started the Grand Rapids PHA Support Group that November. The turnout at our first meeting blew me away: There was definitely a need here. We typically had about 15 people at our every-other-month meetings, and I got to meet some wonderful people.

When the pandemic hit, my group wasn’t interested in virtual meetings, so we are on hiatus.

Since then, PHA brought me into its Generation Hope group for PH patients ages 18 to 39. I became a moderator for PHA’s Generation Hope: Young Adults with Pulmonary Hypertension Facebook group, which has about 650 members.

I’m also a co-leader of PHA’s monthly Young Adult Telephone Support Group. The monthly meetings are small for now, but they keep growing. The other leader, moderators and I are working to generate more interest and greater participation in the group. I am happy to say that it’s working.

I am inspired every day by the members in these groups. I watch them face obstacles and grow confident in who they are with PH. It is not an easy path, and there are plenty of bad days, yet we show up.

We show up every day, even when we don’t want to. The first person who inspired me in PH was me: I had no examples. I didn’t have faith that I could survive and even enjoy life with PH. It isn’t easy, but I proved to myself I could.

Now, all the other PH patients doing the same thing are inspirations to me and each other.

Generation Hope refers to PHA support programs for people 18 to 39. Young adults with PH face unique challenges, including transitioning to adult care, joining the work force, starting a family and more. Learn more, and join PHA’s Young Adults with PH Facebook group or the telephone support group for young adults .

Inspired by Janessa? Apply to become a PHA volunteer.