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…
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…
A popular phrase people like to say when discussing the climate is, “If you don’t like the weather, wait a minute and it’ll change.” Living with a serious illness often can feel this way, too. You might wake in the morning without issue, and by early afternoon experience an onslaught…
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…
What is the main thing that patients and caregivers have in common? I believe the answer is stress. Therefore, one of the best gifts you can give them is something to help them relax. Gift cards are a way of doing that. During endless days of clinic appointments or hospital…
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…
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…
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…
“Success is the sum of small efforts, repeated day in and day out.” My son Cullen could have been the poster child for this famous quote by Robert Collier. The 20th century American author of self-help books believed that “when it comes to finding true success, one needs to…
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 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…
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…
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