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 Mental Wellness Challenges of an Introvert

When my son was diagnosed with pulmonary hypertension (PH), his doctors were proactive in caring for his physical health and forthright about maintaining his mental wellness. He was 8 years old and facing adult-sized concerns and realities. To help process all that was happening, they referred him to a…

The Real Red Band Society

In 2014, my son Cullen received a heart and double-lung transplant after a long battle with pulmonary hypertension (PH). Washington state was home, but for the first four months of recovery, we lived in California, close to the hospital where he received his transplant. Except for an occasional visit,…

Battling PH Risk Can Be a Double-edged Sword

Risk is an essential part of living and as diverse as the humans who partake in it every day. So, saying I’m not a risk-taker is like claiming I don’t need air to breathe. Living is a precarious journey through success and failures. As babies, we are young explorers crawling…

Daring to Be Rare by Believing in the Power of Hope

Year-round, the parent company of this website, Bionews Services, strives to provide pertinent and updated information about complex, rare diseases. Staying current with medical research is a key component of effective self-advocacy, but personal experience is also a gold mine of valuable information and inspiration. Bionews recognizes this by…