“Fatal granulomatous disease of childhood.” How’s that for a stunner? In a November 2012 overview article published in the medical journal Hematology/Oncology Clinics of North America (which can be found—with…
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…
Do you consider yourself a happy person? Are you cheery all the time? Most of us are not, regardless of who we are or the conditions we may have—with or…
Primary Immune Deficiency Diseases, or PIDDs, affect approximately half a million Americans, but there's a twist: There are over 200 different PIDDs, all of which are genetically passed along. Finding…
World PI Week is coming up later this month, from April 22-29. So what better way to celebrate than to learn what exactly PI is! Not to be confused with Pi…
To the casual observer, one-year-old Thor Uran is a happy, healthy toddler with a winning smile and a shock of blond hair fitting for his super-heroic namesake. But Thor’s parents…
I have two sisters, each with the remarkable talent to walk into a thrift store with only a few bucks and walk out with a brand new wardrobe. Growing up in…
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…
When the word came out that a sick baby was in need of a bone marrow transplant and no one in his family was a perfect match, students at Emily…
Three words: You are cured. That's what people with a chronic disease would give anything to hear. But the word "cure" isn't heard enough. In fact, people hardly hear it at…
I am jumping for joy after learning there’s new hope for people in the CGD community! In October 2015, Horizon Pharma, headquartered in Dublin, Ireland, announced they will be opening…
Brothers Michael, 6, and Dylan Cavalier, 4, aren’t exactly like other boys. They don’t make mud pies; they don’t jump in piles of autumn leaves; and they certainly don’t dig…
If you’re a regular PatientWorthy reader, chances are you’ve been on the receiving end of this loaded statement from at least one doctor: “We’re going to need to run some…
The words “happy” and “healthy”—it’s what every parent wants to hear after the birth of their child. Clayton’s parents were no exception. In a Youtube video by Hopkin's children, Clayton's…
In case you didn’t know, October 11-17, 2015 marks the third anniversary of commemorating International Plasma Awareness Week. Sure, you might think that it’s just another ho-hum “awareness week” but…
Check out and pass along the Editor's Choice articles of the week! [one_half] [/one_half] [one_half_last] 5 Ways Your Butt Can Save a Life If you thought your jeans were only…
Denim is a lot of things—it’s versatile, it’s comfortable, and with the right cut, it’s great for your butt. But is denim really life-changing? Thanks to Jeans for Genes Day,…
It’s not often that rare diseases cross with pop culture, but when they do, it’s worth tuning in. This summer, Lifetime Television show, “The Balancing Act,” featured an educational episode…
When you have a rare disease like chronic granulomatous disease (CGD) and have spent the better part of your life being poked and prodded by (hopefully) well-meaning doctors, it’s easy to feel…
Meet TZ the IDF Zebra! We told you this year’s conference was going to be extra exciting in our earlier post, 2 Reasons Why the 2015 IDF National Conference is Extra…
We told you why this year's conference was going to be extra exciting in our earlier post, 2 Reasons Why the 2015 IDF National Conference is Extra Exciting. Find out…
The IDF's 2015 National Conference is quickly approaching! For 3 days, Louisiana will welcome the IDF and all of its constituents and supporters. From Thursday, June 25th- Saturday 27th, the IDF…
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