Doctors don't always know best. That's something every parent whose child has a rare, chronic illness understands. These parents featured on Rare Connect finally got a diagnosis of Muckle-Wells Syndrome…
Dominick “Dom-the-Bomb” Lukowski has always loved baseball. But during his freshman year in high school, he was shocked to notice that he barely had the strength to throw a ball…
Familial Cold Auto-Inflammatory Syndrome is a very rare condition; set apart even from other hereditary periodic fevers. These unique traits are something that patients with FCAS are all too familiar…
You may not know Oliver Bailey personally, but he is one special boy. The brother of Tilly Bailey, who has one of the rarest genetic conditions in the world Neonatal-Onset Multisystem…
Expert knowledge, however indispensable, is no substitute for a generous and comprehending outlook upon the human story with all its sadness and with all its unquenchable hope.” -Winston Churchill We…
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…
Neonatal Onset Multisystem Inflammatory Disease (NOMID) is one of the rarest genetic diseases in the world, but Tilly Bailey, 17, and her family know all about it. Tilly has NOMID,…
CAPS FCAS, MWS, and NOMID all fall under CAPS with mutations in the same gene and share some overlapping symptoms. However, each has unique distinctions and there can also can…
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…
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