PH Parent
Originally published in Spring 2012 Pathlight
PHA's 10th International PH Conference and Scientific Sessions in Orlando will be here before we know it. I’m sure parents are mulling over the decision to attend, but for me it is an easy decision. I will be taking my family to Orlando for my fifth Conference and their fourth. There is no other venue at which a family dealing with pulmonary hypertension can receive the same kind of support, emotional connection and education.
My family includes my husband, Jim, and our daughters, Katy, 13 years old, and Emily, 9. Katy was diagnosed with pulmonary hypertension in 2003, at the age of 4. In 2004 I went to the Conference by myself. It was a last-minute decision to attend, spurred by feelings of indecision about Katy’s medical care. Jim and I were considering putting Katy on IV Flolan(TM) but had no idea what this life change would mean for our family. At the end of the weekend, I left with feelings of hope, inspiration, optimism and confidence that I could make good decisions for Katy’s care. It was such a unique experience that I couldn’t wait for 2006 to take my whole family to the next Conference. You ask why?
There are several major reasons, the first being its educational value. I learn so much from the medical professionals. These professionals specialize in PH and are amazingly dedicated to their patients. They commit this weekend to sharing their knowledge with us. PHA gives structure to this education through scheduled topics and sessions, research posters, and the Exhibition Hall.
Everyone is friendly, compassionate and willing to share their experience and knowledge with you. Not only do you learn from the PH medical teams during the Medically Led Sessions, but during meals, in the hallways, and while attending the Patient/Family Led Sessions. You spend the weekend getting all your questions answered, not by one doctor, but by many. And for me, in my fight to help Katy battle PH, knowledge is power.
Another very important reason that I continue to return to PHA’s International PH Conference is the emotional support my family and I receive from the PH community. Parents of children with PH often struggle with a sense of isolation. PHA makes an amazing effort to provide opportunities for families to connect. Katy gets to spend the weekend with other kids who have PH, my husband and I get to know parents who share the same challenges and Emily gets to have fun with other siblings and PH patients. There is really nothing I can imagine that is more cathartic.
At Conference, parents get to share with each other how we handle school situations, exercise or sports, social situations, and how we communicate to our families about this awful disease. PHA provides many opportunities for us to share: the pre-conference meet-ups, the Patient/Family Led sessions, the support groups, socializing at the Parents' Mixer (new this year), meals and after-Conference hours in the hotel lounge.
Our kids get to find support through many avenues as well. The Kids’ Room includes activities for kids of all ages: crafts, video games, live entertainment and — new this year — a creative expression workshop. A field trip for kids and teens is provided (monitored by a nurse, of course). PHA provides youth learning opportunities and support groups. But mostly, the kids and teens socialize and have fun, both during Conference hours and into the night. And this, I think, is the most healing experience for them.
Finally, I want to share a few of my favorite Conference activities. I don’t ever miss the "Journeys" Luncheon in which patients and their doctors share amazing stories of inspiration and hope (bring a tissue). The fashion show is always standing room only. PH patients, including our friends and family, get to show off how they make their medical accessories a fashion statement! And most importantly, the friends I have made over the years continue to draw me back.
So despite being a nine-year veteran parent of a PH patient, I continue to attend PHA’s International PH Conference. And every time I learn more, find continued hope and inspiration, and feel renewed to face the challenges of the upcoming two years until the next Conference.
