Life as a Caregiver - a Column by Colleen Steele

Colleen was born and raised in New Jersey, and received a Bachelor of Arts in English from Immaculata University in 1994. She lives in Washington state with her husband and two sons. Her oldest child was diagnosed with idiopathic pulmonary arterial hypertension when he was 8. At 14, he received a heart and double-lung transplant. Colleen’s love for writing, experience advocating for her son, and determination to spread PH awareness inspired her to become a columnist and forums moderator for Pulmonary Hypertension News in 2019. In her column, “Life as a Caregiver,” Colleen is open and honest about caring for her son, his PH experiences, and life post-transplant. It is her ambition to educate and inspire others facing similar challenges.

The Hidden Truths About My Strength

I wish I had a dollar for every time I’ve been described as strong, but what if people knew my weaknesses, unfathomable sadness, and heartbreaking mistakes? As a caregiver to my son, I’ve had to accept his reality and mine. I’m not a pillar of strength or perfect in what…

Am I a Caregiver or a Mom?

I struggled with the title for my column because what I write about will be from my perspective as caregiver to my son. However, using the word “caregiver” was bothering me because who I am above all else is his mom. When someone refers to me as a caregiver, it…


A Conversation With Rare Disease Advocates