Ever been put off by a headline, but felt compelled to read the post? Yup. That was me when I happened upon the article, A Day in the Life of…
If Frank Sinatra had CAPS, the lyrics to "I've Got You Under My Skin" might go like this: I've got you under my skin. I've got you deep in the…
Patients with CAPS are one in a million, but that rarity and its presence at birth (even infants with CAPS can be symptomatic), make it important for children with the disease…
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).…
Whenever I tell someone “I have Lyme,” I get reactions varying from “Oh that shouldn’t be a big deal,” to “Oh, yeah I heard that can get bad.” I even…
You may not know this, but a bean-sized gland, located in your brain (behind your nose and between your ears) secretes hormones that influence almost all of your body. What…
Let's take a trip back in time to the year 2001: A new president is sworn into office; the Global War on Terror begins; and a discovery is made on…
The family has left town. The leftovers are dwindling. And yes, carols have once again dominated the airways. All that means is.... Thanksgiving was awesome, but it's Christmahanakwanzika time! But…
Say it with me: "NOH-mid" (or if you prefer, Neonatal-Onset Multisystem Inflammatory Disease...) "NOMID...is a rare disease that is often fatal. This video tells the story of Kayla Martínez, who was…
If you know the '90's with some clue about pop culture, the start of this headline means something to you. But "FCAS"? Maybe not... At the close of the 90's,…
When I see "Marvel" and a picture like the one below... ...I see the makings of a superhero! "A team of researchers at Trinity College Dublin has unearthed what they…
Happy Day-After-Thanksgiving PatientWorthians! Around this time of year, we like to emphasize the amazing gratitude in the chronic disease world. Living with a chronic illness is often a serious bummer, to…
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.…
If rare diseases were participating in a beauty pageant—where “beauty” means “little known,” “poorly understood,” and “damn near impossible to diagnose”—Ehlers-Danlos Syndrome (EDS) would be right up there among the…
Colossal pain. Mammoth swelling. Hypersensitivity. Drastic changes in body temperature. Imagine being in that kind of pain all the time. Frankly, it sounds a little like a nightmare. Well,…
For Part 1 of Laurie's Life with Dysautonomia, click here. For anyone who is still doubting Dysautonomia and POTS, I've come up with what I call the Dysautonomia Party Trick Challenge.…
Have you read the first part of Kathryn's interview? Check out This Honest Mom Doesn't Want You to be Ashamed of Your Rare Disease. “Moving to the west coast has…
I may look "fine" to you on the outside but what I'm experiencing on the inside is not "fine". I have a couple of different forms of an incurable invisible…
Okay, all of you dog lovers, listen up! Love ‘em all ya want—shower your own dog, your neighbor’s dog, a random dog in the park—with all the kisses, hugs, and…
Hey, how’d you like to be able to wear shorts anytime you want, even in the dead of winter? Sounds good, right? How about being able to eat as much…
As someone struggling with chronic illness, you are probably no stranger to the stomach problems that come along with treatment or just a reality of your disease. By now, you might…
Macy's Thanksgiving Day Parade, time with family, food, Charlie Brown, and yes, more food. What else could we be talking about but.... Thanksgiving! I'm sure you have plenty to be…
I love desserts. Its “stressed” spelled backwards. There is just something relieving about being able to sink your teeth into something sweet. But when diagnosed with a chronic illness, often…
Tis the season when gratitude is in the air (can you smell it?). Wait, that may be the pumpkin pie. Anyway, Thanksgiving is a time of reflection. A time where…
A nadie le gustan las vacunas A nadie le gustan los ataques de angioedema hereditario. No es ningún secreto que las personas que están sufriendo un ataque de AEH no…
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