Kiki’s family loves to say, “People are like a baking project. At some point, they’re just done and they’re who they’re going to be.” Well, Kiki still has some baking to do, and she learns a lot from her loved ones living with chronic conditions, including mental illness and Behcet’s disease. With a BA in English, she’s using her skills to tell the stories of people like them.
In an ordinary world, one girl faces an unexpected fight. Fated to take on the mantle passed down by her mother, she must defend her life against this incredible foe. Will she deny…
Daniel's mother, Christine, considers him to be her "Special Little Boy." Born premature after five years of infertility and miscarriages, Christine thinks of Daniel as her miracle. Imagine her horror…
When Debra Chiabai helped her good-Samaritan dad volunteer for his charity of choice—Muscular Dystrophy Canada—they both thought of it as a simple, nice thing to do. Many years later, that…
“We all need role models who fuel our desire to make the world a better place. Mine is my dad.” These are the opening words of a powerful blog post…
Star light, star bright, first star I see tonight? Forget it--Shire's growing something a little more down to Earth. As part of their Me, Not HAE campaign, Shire's new site…
Oh Canada, people think you’re all “please and thank you,” and maple syrup, but I know the truth: You’re a fighter and that fight is most obvious in the Canadian…
What do this woman... and this woman... have in common? Well, besides the obvious similarities between their beautiful blonde locks, both of these woman share an unusual connection: familiarity…
People are not pandas. So as a general rule, seeing bamboo is not going to make us happy—a fact that is most emphatically true for people with ankylosing spondylitis (AS).…
Did you know that there are over 7,000 rare diseases, and 1 in 10 Americans has one? When you're part of a small patient population, it's hard to get noticed.…
"I’m tired of dying and I fear I’ll be dying for the rest of my life.” This is a powerful truth for anyone dealing day-to-day with a chronic condition, but…
He’s been featured on the National Geographic Channel. He’s shaken hands with President Obama. He’s been stopped by the secret service. Even after all of that, Jason Dunn keeps going, and he’s taking his dystonia with…
Dysautonomia (dis-aw-tuh-noh-mee-uh or dis-auto-noh-meeuh) is surprisingly common. Around the world, an estimated 70 million people are impacted by autonomic nervous system disorders. And while some forms are fairly rare, there are…
We recently posted an article discussing the positive connections between dystonia and depression (and Harry Potter, oddly enough). That was just one instance where researchers were finding interesting new treatment…
I’ve found that through all of this, my son has started asking, ‘How can I help? What can I do?’ In a way, those are the very things the Immune…
The Proclaimers said they would walk 500 miles for the one they love. This balloon does one better. In a blaze of purple, 600 balloons were released in the UK…
Think about it: clinical trials are like a huge strip tease. They're waiting to put it all out there, but if no one comes, it’s a huge waste of time…
Having a rare disease sucks, but sometimes it helps to cut your disease down to size mentally--especially if you can't do it physically! And, hey, laughing is better than crying,…
We all know that an early diagnosis can save lives. But, in an unexpected turn, this mother’s late diagnosis is what saved her son. RareConnect.org details the story of Malinda…
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