Have you ever heard of the children’s book, Harold and the Purple Crayon? It’s about a little boy who draws the things he wants to see with his purple crayon,…
Leathia Boyd is a 38-year-old woman, mother, and wife living with sickle cell anemia. She's also an advocate and has been one for more than six years. It all started when she joined…
Recently diagnosed with a rare disease and don’t know where to turn for more information? Have a loved one with a rare disease and struggling to understand the science behind…
I like to say that my brother has an addictive personality. I introduced him to George R. R. Martin’s A Song of Ice and Fire series, and he read the four…
Imagine this: two elementary students are in the restroom at school, smoking a bowl. And then, the principal walks in. Rather than flying off the handle, the principal smiles and…
June-September is wedding season. One of the most frequented topics of conversation among friends is weddings. It seems I'm at a stage when no matter who I'm with or what…
Dancers have amazing muscle control. Through hard work and practice, they learn to make the tiniest movements precisely. So imagine the terror former dancer Emily Thompson, then only 20, felt…
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…
Anyone can tell you that life sometimes wears us down. With so much to do and too little time, we sometimes find ourselves running on inadequate sleep and Starbucks lattes.…
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…
Few things are scarier in life than dealing with a sick child. But for some parents, that fear is compounded into a living nightmare when they are told their child…
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,…
Want some more news, events and announcements on Sickle Cell? We got 'em! [one_half] [/one_half] [one_half_last] Brazilian Researchers Propose Classification of 3rd Sickle Cell Subtype SAFE Treatment for…
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