I was diagnosed with idiopathic pulmonary arterial hypertension (IPAH) a little more than seven years ago. I’ve participated in studies. I have a care team that allows me to ask questions and be a part of my treatment journey. I’ve used SubQ pump therapy and recently transitioned to IV therapy.
I participate in the Pulmonary Hypertension Association (PHA) Facebook groups, offering advice and asking questions. I consider my positivity and ability to empathize as assets for myself and others.
Last fall, as PH Awareness Month approached, Michael Knaapen, PHA’s director of patient and caregiver programs, asked on Facebook, “What will you do to raise awareness in November?” That’s when I applied to volunteer for PHA in a way that was manageable for me. I think I have a lot to offer as a result of my personal journey.
I can’t travel to Conference. I’m on six to seven liters of oxygen, which prevents me from flying. It also limits long road trips. But I see all the amazing connections people make when they attend PHA’s International PHA Conference and Scientific Sessions. By volunteering, I thought I’d feel more connected to the community of fellow PHers.