Sometimes when there’s complicated subject matter on the line, it’s easiest to take it back to the basics—in this case, the 5W’s. It’s elementary, we know. But handy, right!? So…
Editor's note: Ehlers-Danlos syndrome research is constantly evolving. Since the publication of this article, we have covered more types that were not included in this article. To check out a…
Myasthenia Gravis (MG) is a debilitating neuromuscular disease characterized by muscle weakness that gets worse during periods of activity and improves after resting. It is sometime fatal because the muscles…
Chronic granulomatous disorder, or CGD, is an inherited immune disorder where certain cells (called phagocytes) are unable fight bacteria and fungi. Symptoms include swollen lymph nodes, pus-filled bumps beneath the…
Common variable immune deficiency (CVID) occurs when the body doesn't produce sufficient amounts of certain antibodies (also called immunoglobulins) in the liquid part of the blood. The result is the patient's immune…
Living and Traveling with Primary Immunodeficiency Okay, just because you’re living with Primary Immunodeficiency (PI), doesn’t mean that you’ve got to be a little wall flower or confine yourself to…
Susan realized there might be more to her son’s quirks—like his inability to breast-feed, the continuous projectile vomiting, and his taking an oddly long time to drink a bottle—when a doctor said…
Happy Passover Weekend Patient Worthians! This week Acromegaly is taking over! It's no secret that rare diseases go misdiagnosed, so in Biblical times, it's safe to say this disease when UNdiagnosed for…
To understand the rare disease Amyloidosis, you have to understand the underlying cause. When bone marrow produces an abnormal protein, called "amyloid," it can be deposited in virtually any organ or tissue in…
At first, I howled and wanted to tear my hair out…. I was reading an article about the problems a famous golfer was having with his putting during the PGA…
What the heck is a nanoparticle? It sounds very Twilight Zone-ish, and in some ways, nanoparticles are just that. The thing is, nanoparticles are the movers and shakers of the biologic…
Alright, folks: Get out your calendars! Or more appropriately, pull up your calendar on your phone! Now, go to May 22nd. It's a Sunday. How does your day look? Free?…
Behçet’s disease. If you’ve never heard of it, it’s a disease that causes blood vessel inflammation. If you have heard of it—or actually have Behçet’s—you’re probably well aware of the resulting…
Wilson Disease: the rare, autosomal (meaning it occurs in both men and women), recessive (meaning that an individual must inherit one copy of the mutated allele from each parent to…
Have you ever gone to WebMD's symptom checker for a simple pain in your stomach or a weird patch on your skin? I know I have, and more often than…
Toronto street artist, Victor Fraser, is on a mission—and that mission recently took him to Paris. In the wake of the November 2015 terrorist attacks that left 130 dead and…
It’s a scenario that turns veins into ice: your certified healthy infant’s belly swells to the size of a basketball and doctors say he has less than 48-hours to live.…
“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…
I love stories where people get what’s coming to ‘em! No, I don’t mean bad-guys comeuppance stories (although I DO enjoy an occasional one). I’m talking stories of deserving individuals…
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…
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.…
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…
Not many people would consider a heart attack to be a positive event, but for David Collings that's exactly what it turned out to be. While out walking with his…
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…
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