It's not a happy story. Little Riley Brown beat the odds and celebrated his first birthday last April. Two months later, he passed away from the rare congenital disorder called…
What do you think of when you hear "cystic fibrosis"? Well, if you know what it is, probably nothing good. If you don't know about cystic fibrosis and you've clicked…
Cuando la Cámara de Representantes aprobó una ley innovadora, Ley de Curas siglo 21, en un voto de 344-77 voto, la decisión se sentía como un desfibrilador, el despliegue…
On February 7, 2016, an elderly man died in the foothills of the San Gabriel Mountains. Okay, but why is that remarkable? After all, elderly men and women pass away…
Maybe it’s just me, but it feels like turning on the television, picking up a newspaper, or going online should come with a trigger warning. Everywhere you turn it seems…
Most people don't associate the word "fever" with something chronic. They think of it in terms of a flu or passing infection. You've heard the phrase: "Feed a cold. Starve a…
We have all heard the phrase knowledge is power. Everyone, at some point in their lives, has to learn how to do something. From cooking, to driving, to using the…
desarrollos recientes de Twitter en la comunidad crónica han implicado el posible descubrimiento de una nueva mascota. Karl Austin (@ Porkchop275) se encontró con una imagen de un tiburón, y…
Familial cold autoinflammatory syndrome (FCAS) is an extremely rare disorder. It's characterized by episodes of joint pain, fever, and other symptoms of inflammation. All of these symptoms are triggered by…
Dr. Paul Raffer was a neurologist who practiced medicine until he got sick with mycosis fungoides. His symptoms began on his skin, and after consulting with a colleague, he was immediately…
On Saturday, 29 October, 2016, the Adam Gardiner Fund will host Come Racing at Rosehill Gardens in Randwick, Australia. The event, like everything the AGF does, is intended to raise funds to…
La mayoría de los padres están ansiosos de que las primeras palabras de su hijo. Pero como el Daily Mail en el Reino Unido informa, Stevie y David Taylor esperaron…
I recently posted an article on aplastic anemia in response to another post that I’d read. I felt compelled to mention that a dear friend of mine was diagnosed with…
Botox may be the new fresh face headliner in the therapeutic industry. Who knew? We see and read conversations about Botox more commonly in top women’s magazines, the likes of Cosmopolitan,…
If you’re the parent of a small child—or any size or age child, really—here’s a good reminder of why you should hold your baby a little closer and be thankful…
You know that saying people use when someone’s facing a flood of crises? “God doesn’t give you more than you can handle?” Depending on your point of view that may…
What if you had an inherited disorder that caused a fat called globotriaosylceramide to build up in your cells? Chances are pretty good that you'd be diagnosed with Fabry disease,…
Epidermolysis Bullosa, or EB, is a connective tissue disorder that approximately 200 babies are born with each year. The most serious symptom is the extreme fragility of skin. People with EB suffer…
I think, the earliest I can remember of any issues that I was having with dystonia were just not being able to hold a drumstick or a mallet. I used…
Si usted es uno de los aproximadamente 1 de cada 25.000 a 50.000 personas en los EE.UU. que viven con inmunodeficiencia variable común (ICV), inyecciones regulares IV son un hecho…
Hey, you want to piss me off? Talk to me about the miraculous health benefits of vitamins and supplements! Vitamin D, Vitamin B12, Vitamin R2D2, Fish Oil, Hemp Oil, Pressed…
I applaud the American Association of Kidney Patients for their efforts to raise awareness about a condition called Fabry disease. A rather rare genetic disease, Fabry disease seems to affect…
The process to get diagnosed was a very long one. It was over two years that I first started seeing a neurologist regarding the concerns and issues that I was…
Charis es una californiana, activista, motorista ávida, blogger, y modelo. Ella fue galardonada con el Premio 2014 Avances en la política por la Arthritis Foundation, la región del Pacífico…
Remember that questionable-looking salad you ate in a not-exactly-pristine restaurant? You've been trying to forget the server's blackened fingernails and sweaty brow, and as you double over from abdominal pain, you…
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