Have you ever heard of polycythemia vera (PV)? Me neither, and that’s why I had to do some digging. There were quite a few facts that carried some heart-string shock…
Gastroschisis is a birth defect where the intestines and sometimes other abdominal organs such as the stomach or liver are outside the body, rather than inside. This used to come as…
As more states open their arms to the wonders of marijuana (for medical purposes and for fun), they're also opening up a whole new way to look at treating rare…
In honor of liver awareness month, we've got some good news for people living with NASH, or nonalcoholic steatohepatitis. NASH is a kind of fatty-liver disease that is not connected to…
When I hear the word Parkinson's, the first image that comes to mind is a long-haired guitar player on stage, captivating the hundreds of people who'd come to hear his…
Shocker! Did you know it’s possible to acquire hemophilia? There’s a professor who I’m obsessed with from Texas—that would be “obsessed” as in a healthy obsession! And here’s why: He…
Can you imagine your toddler son having to get a lumbar puncture in order to be diagnosed with a condition that, despite the fact that you've never heard of it, he'll…
If you're reading this, I want you to forget who you are and take on the identity of a doctor, specifically an endocrinologist... starting NOW! GO! The Case A female…
If you have Maroteaux Lamy syndrome, there's good news and not-so-good news. On the one hand, an understanding of this rare genetic disease has been reached by the medical community.…
I feel like shouting from the rooftop after reading about this 7-year-old girl named Yasmin. After a long hospitalization that spanned several months, she finally got released because her body…
Let's talk about medical marijuana for a moment. As soon as the word "marijuana" is introduced, people automatically think of users being "stoned," or they think of the fabled hippie…
When most people visualize Huntington's disease, a fatal neurological disease that causes the nerve cells in the brain to break down, the first thing that may come to mind is…
Candace recogió sus cartas, lanzaron "Oceans" en el fondo, y se presiona el juego cuando comenzó a grabar un video explicativo de su rara enfermedad, con frecuencia mal entendida, variable…
There's an old fable that reminds me, in a way, of primary myelofibrosis, or PMF: A shepherd is in the desert with his camel, and as night approaches, he pitches…
Serendipity (n): la aparición y el desarrollo de los acontecimientos por casualidad en una manera feliz o beneficioso. Como muchos de ustedes probablemente saben, el viaje a un diagnóstico cistinosis…
Es una especie de una insignia de honor cuando una enfermedad rara consigue tiempo de emisión en un programa de televisión a nivel internacional querida. Y tal vez los médicos…
I don’t know what it is about hereditary angioedema (HAE) that makes people with it have a really great sense of humor, but they do. Maybe it’s the absurdity of…
Any of you ever think about running a marathon? I know I have. I've thought about it. Have I run a marathon? NOPE! Sure haven't. That sh*t looks hard. Look,…
Multiple. System. Atrophy. Even if you know nothing about MSA, stringing those three words together doesn't sound promising. MSA is a neurodegenerative disorder that's characterized by autonomic nervous system failure.…
Ok, es el momento para un experimento. Coge un grupo aleatorio de gente de la calle y pegarlos en una habitación (asegúrese de preguntar en primer lugar, por favor). Pídales…
Exercising with CRPS can be beyond difficult, but I’m sure everyone from your doctor to your mother has encouraged you to do it. Why? CRPS already causes you pain, and…
Miracles never cease to amaze me. And quite frankly, it’s been a long time since I’ve been convinced that one actually has happened—although in theory, I welcome miracles every day!…
Primary myelofibrosis is one in a group of rare diseases called myeloproliferative neoplasms, or MPNs. It is characterized by an overproduction of one of the three components of blood: red cells,…
I woke up in an emergency room surrounded by nurses, doctors, and tearful friends. I had no idea how I got there or how long I had been there. I…
Spoonies are strong every day and in spite of a lot. Don't forget that you have a courageous heart <3
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