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…
We like it when people achieve great things despite insurmountable obstacles. This is not unique to living in the modern world or being an American; however, this is a big part…
There is a rare disease—and I do mean rare because less than 100 people in the world have been diagnosed with it—and it has an uncommonly long name. Get ready…
The American Porphyria Foundation has a section on its website dedicated to telling patient stories. It gives voice to people's experiences and allows them to connect with others and share…
Sometimes I muse considering the first person to pioneer certain things. For example, who looked at mushrooms growing out of a decaying log and thought: “Yum”? Or how about the person…
I think it’s safe to say most people probably dream of making the world a better place in some way. Many of us are able to do just that by…
Fifteen is such an awkward age. Your body is growing; you might not have gotten past the clumsy, gawky, gangly stage yet. You’ve started to look at the opposite gender…
Alfred, Lord Tennyson wrote, “’Tis better to have loved and lost than never to have loved at all.” This may be true for love. If you have loved before, you…
Food allergies are nothing new. For two decades, the portion of children with a peanut allergy has essentially tripled. Eggs. Soy. Wheat. Fish. Onions... They’re all common food allergies. Besides…
According to the Daily Mail, 18-year-old Lewis Nickell from Northern Ireland has Tourette syndrome. The condition is characterized by a mixture of voluntary noises and movements referred to as tics.…
Whether it’s hiking the rainy hills of Kauai, sleeping over the water in Bora Bora bungalows, exploring inside Neuschwanstein Castle in Germany, or looking over the picturesque Matterhorn, there are…
Leave it to a sports award show to recognize what a real fighter looks like. ESPN's annual award show (the ESPYs) honored 15 year-old Jarrius Robertson last week with the…
One grandfather in the UK is took a nontraditional route to show his love and support for his granddaughter and her rare disease. Some people run 5Ks, some people go…
Each year on the very last day of February, Jeff Leider makes a detour on his Hunter syndrome (mucopolysaccharide II) journey to travel from his home state of New Jersey to Washington…
In the span of five years, 3-D printing has taken off. What was once a hopeful idea for the future is now a common amenity in universities, a toy for…
Scotland’s Aaron Hunter went on Twitter to challenge the one and only Iron Man. He asked him for help with raising funds and awareness for rapid-onset obesity (RO) with hypothalamic dysregulation…
If you're a millennial, or if you are close to a millennial, or actually if you just have a social media presence at all, you have probably heard of the…
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