Each step with dystonia can feel like a marathon. As it turns out, some people in the community mean that literally. Marathons—the 26.2 mile behemoths—have become a worldwide phenomenon. The TCS…
When most of us think of breathalyzer tests, we picture flashing lights, police officers, and stern discussions of how fast we were driving (…or is that just me?). But of…
Have Lyme disease and want to to learn more about it? What about meeting other people with Lyme disease? Sound like something you're into? Come out to the 10th annual Lyme…
Pulmonary arterial hypertension (PAH) is a form of high blood pressure affecting the arteries in the lungs and the right side of the heart. The disease is characterized by increased blood pressure…
Premature babies have enough to deal with. Not only do they face the possibility of long-term health problems like impaired cognitive function, behavioral/psychological problems, and cerebral palsy, they first need…
Imagine your child is stuck at the bottom of a long transplant waiting list when he or she desperately needs a new liver. The thought is terrifying--and for many, terrifyingly…
Common variable immunodeficiency, or CVID, is anything but common; it affects about 1 in 20,000 people. It is, however, characterized by a deficient immune system and can present a wide variety…
A guy walks into an emergency room. He tells the doctor, “I’ve got abdominal pain. Can you help me with my (IBS)?” The doctor shakes her head and says, “No, but…
Nobody ever asks for a diagnosis, much less, expects it. But if you find yourself struggling to accept less-than-ideal news, it doesn't hurt to be informed. Here are five questions…
For the Rust family, 2015 was challenging—challenging in ways they never thought imaginable. Why? Because this past year, their eight-year-old son Jourdin began displaying peculiar symptoms—extreme weight loss, in particular—which started…
If you recall, here at PatientWorthy, we've talked a lot about "newborn screening." In case you missed it: What Every New Mom Should Know About Tyrosinemia What Every Pregnant Woman…
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…
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