Author Archives: Colleen Steele

Let’s Learn Something New for Rare Disease Day 2021

According to NASA, the number of exoplanets, or planets beyond our solar system, is in the thousands and rising. Rare diseases are kind of like exoplanets. There are many, but unless you are a medical specialist, scientist, or patient diagnosed with one, you probably are unlikely to know much…

A Positive Perspective on Gaming and Your Health

I have read articles claiming that playing video games excessively can increase the risk of health problems. Instead, they encourage children to go outside and play, and adults to hit the gym. That sounds like solid advice for healthy individuals, but for those battling serious illnesses, video games can provide…

What Is Your Identity Outside of Patient or Caregiver?

My son Cullen was 8 when he was diagnosed with pulmonary hypertension (PH). During his pediatric PH years, I had the pleasure of meeting other children just like him. Kids who liked to have fun, learn new things, and express themselves through talents they were just discovering. Young people who…

Learning to Laugh at Embarrassing Medical Moments

Being human makes everyone susceptible to embarrassing moments. Some have learned to deal with them by laughing at themselves. Facepalm-worthy fumbles happen, even when dealing with something as serious as a rare disease. Medical faux pas might sound like no laughing matter, but in my experience, they can offer comic…

I’m Working on Accepting the Risks of Imbalance

  When I look at my Christmas tree, I appreciate its Christian symbolism as much as I do its beauty. There are many meanings passed down throughout history, but I have my favorites. The triangular shape represents the Holy Trinity and the upward-pointing branches are symbolic of my praise…

PH and Transplant Strengthened a Brotherly Bond

My sons are 13 months apart and affectionately referred to as “Irish twins.” Cullen is 21, and Aidan just turned 20. My husband and I hoped that having them close in age would foster a close friendship for life. But different personalities and a rare disease placed a gap…

A Little Effort Is Worth the Christmas Joy

It’s been a long, difficult year, so let’s make up for it with over-the-top Christmas cheer. We should decorate our homes from floor to ceiling, and ground to rooftop. Bake, cook, watch holiday movies, listen to carols, buy lots of gifts, wrap them up, display them under the tree, open…

Life Is Worth the Picture

Life with pulmonary hypertension was far from picture perfect, but I always took snapshots anyway. No filters, just life the way my own eyes had seen it. I captured reality from all angles: the pleasant and the painful, the boring and the extraordinary, the successful and the disappointing, the predictable…

30 Days of PH: Don’t Stop Believing

Day 30 of 30 Days of PH⁣ Topic: Don’t Stop Believing This is Shannin’s Story @Shanninstromhenry Zoe Henry is a sassy 12-year-old who has had PH her entire life. She was born with a Congenital Diaphragmatic Hernia and spent her first 3 months in the NICU. She…