We’ve all played hooky once or twice, right? Even your parents have played hooky before. That’s why they were so skeptical of you when you were doing it. But Michelle…
Most kids don’t like to share. The occasional hand-me-downs? Sure. For me, my books, games, and beloved Dale Earnhardt hair bows were sacred property—mine, mine, mine. I chose not to…
If you’re lucky enough to find a job that you’re passionate about, it’s easy to see “work” as anything but. Still, love your job or not, it’s important to know…
Mermaids have unique breathing concerns while they’re on land. In Disney’s “The Little Mermaid,” a young mermaid princess trades her voice for an opportunity to live on the land and…
Please. Take just five minutes out of your day to read about this SUPERBLY inspirational mom from Australia whose son has juvenile idiopathic arthritis (JIA). Yes, I’m begging but it’s…
Life was so much simpler when we were kids. We didn’t have to worry about bills, or how what we say could accidentally offend someone else. Heck, even the stories…
According to the Rare Disease Report, 50 years ago, when Tommy Hoag was six years old, he received a kidney transplant. Tommy needed this transplant after having Scarlet fever and…
Psoriasis is often labelled as “disgusting” or “contagious,” causing people who are afflicted by this disease to feel embarrassed and hide their skin from the rest of the world. But…
As a young woman, my friend Ruth Williams might have been concerned about getting breast cancer, but she never considered the condition that would threaten her life. She was 23,…
In 1998, The Mighty first brought the rare disease community into the spotlight, followed by Extraordinary Measures in 2010. Now, seven years later, The Big Sick is doing it again…
A breakout of pimples, a sunburn, and bad dandruff are all skin aliments that we probably faced while growing up, and all probably made us feel lousy, or at the…
Karl Swaine is nine years old. He has a rare progressive and genetic disorder called Hunter syndrome. This disorder prevents the body from breaking sugar molecules down. Throughout the world,…
When you think of an inspiring athlete, who comes to mind? Jesse Owens, who went to the 1936 Olympics held in Nazi-controlled Germany and proceeded to win four gold medals…
The phrase “take advantage” is a bit strange. It can be quite innocuous with regards to using something. For example, there is nothing too bad about saying, “I’m going to…
As a teenager, my acne and periods were agonizing! I have high school yearbook pictures that still make me cringe. After gallons of over-the-counter acne medications and pain relief, it…
What happens when you imagine running a marathon? Unless you are an avid runner, the thought may make you laugh or even cringe. Running even one marathon may seem nearly…
In my opinion, Sam Berns is the face of progeria. I first saw his inspirational Ted Talk, “My philosophy for a happy life,” a couple of years ago, but then…
Choroideremia is a disorder that progressively causes you to lose your sight. There is no cure. According to Pinstriped Prospects earlier this year, Markie DeVoe is a 12-year-old living with the…
A mother’s love is like no other. But being told your child will be born with a rare and serious medical condition can be overwhelming. Especially when there’s no cure,…
Alison Laird is 42 years old, and she has GNE myopathy. The disorder causes the progressive deterioration of muscles. It eventually causes immobility. For anyone, the news of this diagnosis…
Dogs truly are man’s best friend. They share our lives with us, but now unfortunately, they also share our cancers. There have been speculations for a while that there are…
I started seeing George in the beginning of my second year of college. It was a great, no-strings-attached, friends with benefits “relationship” that was fun and carefree. After a couple of…
In writing for Patient Worthy, we’re privileged to discover some amazing stories of how people live with—and live through—the adversity of having a rare disease such as adrenoleukodystrophy (ALD). Sadly,…
Parents will do anything for their children, especially Jeremy Cortner, father of son, Casey. According to Journel Sentinel Casey was diagnosed with craniosynostosis at birth, which is a rare condition…
Ah, the seventh-grade science fair, I remember it well. Not being an overly imaginative student, I came home and announced I was going to make an exploding volcano for my…
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