One of the toughest parts of living with Sjögren’s syndrome is you can’t always toddle down the road to your local Sjögren’s patient get-together. There are no flashing neon signs…
above photo by Sandro Georgi Photography Kristina was symptomatic when she was around 12 or 13 but she wasn’t diagnosed with narcolepsy until over a decade later at 24. She thinks…
Imagine que es un increíblemente feliz y activa 8 años de edad, que ama los deportes. Ahora imagina las rodillas y los tobillos hasta la hinchazón. Se mira hacia abajo…
When she was two years old, Terry was diagnosed with tyrosinemia, a rare metabolic disorder makes the body unable to break down the amino acid tyrosine. Tyrosine is an important building block of…
First things first. If you're in the U.S., Sjogren's is pronounced thus: SHOW-grin's. And because the physician it's named after was Swedish, there should be little dots above the "o": Sjögren's.…
It's hard to relate. It's hard to relate to people trying to relate. I always like to say, "Perspective is reality." Now, you're probably thinking, No, reality is reality. Yes,…
Although I’m no “spring chicken,” I still grapple daily with the reality that innocent babies get sick and die, or that they don't die, but they languish and suffer; it’s…
There's a pretty large handful of primary immunodeficiency disorders, but we're only going to focus on one: chronic granulomatous disease (CGD). I know what you're thinking... What the heck is…
Nothing beats a live, in-person connection when it comes to feeling understood—especially when you just want to meet someone who understands your disease because, “YOU HAVE IT, TOO!?!” But, let’s…
De acuerdo con la Fundación de Fibrosis Quística, cerca de 30.000 personas viven con FQ en los EE.UU. y casi 1.000 nuevos casos son diagnosticados cada año. La fibrosis quística…
...But you didn’t order fries and you certainly don’t want the combo meal! I recently read about Kelly du Plessis, a Mom in South Africa whose 6 year old 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…
Kudos and congratulations to TV station, KCRA 3 for heading up a special blood drive! They put the spotlight on J.J. and Carson Huish, twin boys who have Severe Combined…
Well, the French are at it again—thank goodness! French pharmaceutical company AB Science, announced in 2015 that it hit its endpoints in a phase lll clinical trial for human subjects who…
Patient Worthy had the privilege of sitting down with Kristina, a wife, mother and student, and hearing about her journey with Narcolepsy. Kristina found out she had narcolepsy and had…
This awesome quote comes to you from the Surviving Chronic Pain Facebook community. Not sure who the original source of the quote was but if you know, we wouldn't mind…
Orphan Product Extensions Now Accelerating Cures and Treatments Act of 2015 needs your help! Via Congress.gov the Open Act stands to accelerate cures and treatments for rare disease and it could quite possible double…
Hello Again Patient Worthians! This week we are highlighting part TWO of a story about a man with cystic fibrosis, racing for his non-profit RaceCF and to spread awareness of exercise therapy…
Liz is living with Cushing's Disease and is on a mission to be happy and well Patient Worthy is so excited to welcome Miss Liz Calabro to our family of incredible…
Photography by Sandro Georgi Photography Nolan is an incredible person and father who is living with dystonia. He hasn't let the movement disorder hold him back from anything, even running a…
The lymphatic system is the body's first line of defense against disease, so when lymphatic cells suddenly begin to multiply and overwhelm the immune system, it might be diagnosed as Castleman…
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