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.
It seems like everyone and their mom has a GoFundMe page for something or other: Want someone else to pay for your trip to New York? GoFundMe. Jumped off a…
While his peers were getting learners’ permits and homecoming tickets, 16-year-old Conner Vollmer was getting an unexpected diagnosis of myelodysplastic syndrome (MDS). The pre-cancerous condition is rare, and even more…
In the rare disease world, nothing causes rippling waves of excitement quite like a new drug announcement. So prepare for a tsunami, because that’s exactly what you’re getting… sort of. Spring…
Between all the murder, betrayal, and Shakespearean-esque drama, no one would say Fox’s breakthrough, musical-hit Empire represents reality. But one can argue the show represents an important step forward for the…
Children’s books have a way of staying with you. My mom used to read to me all the time growing up. Just about every night before bed, she’d grab a…
You know what they say—everything’s bigger in Texas. And this year’s FH Global Summit, located in sunny Dallas, will be bigger than ever. Nobel laureates as speakers? √ Intensive discussions among healthcare leaders? √…
Hereditary Angioedema (HAE) is a rare disease—like an incredibly rare disease, affecting only about 1 in 10,000 to 1 in 50, 000 people. Despite that, over recent years, it’s gotten…
Each step with dystonia can feel like a marathon. As it turns out, some people in the community mean that literally. Marathons—the 26.2 mile behemoths—have become a worldwide phenomenon. The TCS…
A guy walks into an emergency room. He tells the doctor, “I’ve got abdominal pain. Can you help me with my (IBS)?” The doctor shakes her head and says, “No, but…
Fundraising isn’t easy. Like, it’s beyond not easy. But when the cause is right, you’ve just got to try. And the Reardons certainly have a good cause. When their son…
Ever heard that blood is thicker than water? Not only am I sure the National Hemophilia Foundation (NHF) has heard it—they’re essentially creating a movement around it. And it’s pretty…
In theory, I know there are people who don’t like chocolate. I have been told they exist. And I respect that choice. But my chocolate-loving heart really aches for people…
If there was one song that could get me poppin’ throughout my childhood, it would have to be “Parents Just Don’t Understand” by the Fresh Prince himself. Come on, you…
Wheelchair pillow: $300 Monthly prescription costs: $400 The cost of having multiple autoimmune disorders? Exorbitant (and growing). On websites like PatientWorthy, we talk a lot about the physical tolls rare…
For many doctors, Castleman disease seems impenetrable. Not only is the disease incredibly rare (only affecting maybe 30,000 people in the United States), its innocuous smattering of symptoms are easily…
It’s a terrible thing to lose someone. There’s no getting around that. But some people can take loss and find new purpose. For Eric Marder’s family, that purpose became Eric’s…
Fine, I’ll be the first one to say it—I’m a cynic. Straight up. It’s a family trait so proudly established that when questioned by a very young Kiki about our…
Okay, you know what’s funny? I literally just wrote an article "The Paleo Diet and Narcolepsy: What You Need To Know" about a “Paleo Narco,” a young woman with narcolepsy…
The Paleo Diet—which has the hunter-gatherer food aesthetic of fruits, vegetables, and lean proteins—has gotten a whole spectrum of attention. We’re talking everything from obsessed proponents to frantic debunkers, and all the…
Life with chronic illness requires adaptation, and for kids diagnosed with cystinosis, adapting starts young. Sarah Larimore was barely out of infancy when her parents first heard the word “cystinosis.”…
Winters may be long in Canada, but the residents of Ontario’s Saugeen Shores are hardly cold-hearted. On April 1st, 2016, the Saugeen Shores Skating Club is inviting Ex-NHL players, figure…
My mom is a big believer in trying things. She never wanted her kids sitting still, so when we weren’t being unceremoniously pushed outside to hang out with neighbors, we were…
Raise your hand if a doctor’s accused you of pill-seeking? Blamed your symptoms on your weight or claimed you were too young, too black, too old, too Latino to be…
You know how that saying goes: “All that glitters is not gold.” Or maybe, “too much of a good thing can make you sick.” Both apply to the metal copper.…
Thanks to a bad band's 1984 contribution to "culture," everyone’s got a sarcastic “I’m a big deal in Japan” T-shirt. But for once, a blog is writing that phrase without…
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