Primary Immunodeficiency (PI) can be very hard to explain to people and very hard to understand. The thing is, most of the time we look healthy on the outside. But…
If you have pulmonary arterial hypertension (PAH), you know it's a rare form of high blood pressure. It affects the arteries that run from the heart through the lungs, causing those…
If you had the opportunity to make a wish, what would it be? Would it change if your child had Lennox-Gastaut? I can think of a few wishes I'd make,…
One of the most popular brands of literature (yes, people still buy books; some even buy them the old fashion way at a bookstore) is the standby classic: mystery. It…
Wilson disease is a rare genetic disorder. What does it cause? Well, copper begins to build up in the liver and brain, sometimes to a dangerous degree. One young boy in India…
Tuberous sclerosis complex (TSC) is a rare genetic disease. It causes tissue to form abnormally in patients at a young age. Different organs are affected by it, meaning that symptoms…
What is carcinoid syndrome? This syndrome is caused by tumors that grow in the mucosa of the gastrointestinal tract. It occurs in people who have carcinoid tumors, although not all go…
A firefighter, also known as a fireman, is a highly skilled man or woman who works to combat and extinguish fires. They also take steps to prevent fires, act as…
“Knowledge is Hope” is the motto of the Mesothelioma Applied Research Foundation and it could not be more true. While mesothelioma can be a terrifying diagnosis, researchers have made great…
You’ve heard the expression, “What’s in a name?” How about, “What’s in a number?” September 7 is World Duchenne Awareness Day. It occurs on that day every year because the 7th…
With fishing and summer recreation seasons just around the corner, you could be exposing yourself to Lyme disease and not even know it. You might become just like one mother…
Ehlers-Danlos syndrome (EDS) is incredibly diverse in its symptoms, and most of the time patients don’t have all of them at the same time. Additionally, it’s a spectrum condition so…
Glanzmann's thrombasthenia (GT) is an inherited autosomal disorder that begins at birth. It causes prolonged or spontaneous bleeding and affects one out of one million people. Patients tend to bruise easily and…
Kyrus Rogers a former security guard was supposedly misdiagnosed when an emergency room physician apparently failed to run diagnostics for transverse myelitis (TM). Rogers, once a healthy, athletic 30-something, is…
The scenario is much more common today than in years past. A patient who doesn't abuse alcohol or have chronic hepatitis is admitted to the hospital, many times the ICU,…
Happy Memorial Day Weekend Patient Worthians! This week we have an inspiring interview with the CEO and Founder of the Hereditary Neuropathy Foundation. We also have a motivating story on a cheerleader battling Friedreich's…
A little pain usually is a good thing. It's our alarm system. It's our body's way of saying, "Hey, that's hot... Get away before it hurts you!" However, when the…
First, there was the saltine cracker challenge, which allegedly has its origins at the University of Tennessee with Peyton Manning making a bet. Then came the Sprite and banana challenge…
I know, we’ve all heard it a million times before. A good night’s sleep is essential for optimal health. However, as much as we love sleep, it’s easy to get…
Guillain-Barre Syndrome is a rare disorder that attacks the body’s nervous system. For anyone who has gotten Guillain-Barre Syndrome, the symptoms begin swiftly. It causes paralysis and symptoms typically begin…
Homocystinuria is an extremely rare disorder. It is estimated that only 1 in 344,000 people in the world have it. Homocystinuria is a genetically inherited. This means the child’s parents…
Children need exercise. Not only for the health benefits but for the social benefits too. Playing games like hide-and-go-seek and tag, and participating in community sports like soccer and swimming,…
Let's talk about Mount Everest. It sits on the border between Nepal and China and its peak is 29,029 feet above sea level--which makes it the highest mountain on earth.…
Every spring, as the weather warms up, millions of Americans strap on their hiking boots, pack their tents, and head out into the woods for a weekend of fun and…
The Susan Skinner Memorial Fund (SSMF) Scholarship was created to help foster the education of the newest generation of bleeding disorder advocates and researchers. Two scholarships are being offered this…
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