I saw a quote, recently, that resonated with me. It said: "I fight for my health every day, in ways most people don't understand. I'm not lazy. I'M A WARRIOR." Dealing…
Si usted o su ser querido está viviendo con una enfermedad crónica rara, probablemente ha pasado por las diversas etapas del duelo: negación, ira, depresión, negociación, y es de esperar…
If you suffer from complex regional pain syndrome, or CRPS, you know the value of effective pain management--because without it, life kind of grinds to a halt. Unfortunately, many of…
"Me gustaría que la gente simplemente tomar cinco minutos para buscar el síndrome de Ehlers-Danlos para crear conciencia." Estas son las palabras de 15 años de edad, Mya Lilly Hurst,…
When a fetus inherits a mutated copy of the TFAP2B gene, the development of the heart, face and arms and legs is affected. As a result, when the infant is…
Si usted o su ser querido está viviendo con hipercolesterolemia familiar homocigota (HFH), que va a estar encantados con esta noticia - y se lo merece, también! La Fundación Defensor…
Cuando la mamá de Hagan dice a los 12 meses de edad, muchacho irlandés que él es uno en un millón, no es broma - y que no es exactamente…
Comprensión de la fibrosis quística (FQ) ha, afortunadamente, recorrido un largo camino desde sus primeras descripciones de niños que son "Embrujada" o "hechizado", porque su sudor sabor de la sal.…
“Motherhood is the hardest job you’ll ever love.” I’m not sure who first coined that phrase, but its truth becomes clearer to me every day. And nowhere is that truth…
Los hospitales son el germen de postrado, lugares infestados de bacterias. -especialmente las infecciones adquiridas en los hospitales infecciones por estafilococos, son conocidos por ser una causa principal de muerte…
Not everyone can appreciate a sarcastic sense of humor. And for whatever reason, this dry sense of humor usually comes with a warning. So this is yours. Please be advised…
Obtener un diagnóstico de cualquier tipo es miedo. Obtener un diagnóstico de una enfermedad autoinmune rara y potencialmente mortal que nunca han oído hablar de es aterradora. Pero si estás…
Man, I’m not so sure that I believe in angels, but my heart is overjoyed whenever I hear about strangers who’ve donated ANYTHING to help ANYBODY! With aplastic anemia—depending on…
It has been said that there is strength in numbers, and we are much stronger together! That’s probably why I connected with Shira Strongin, a young teen who lives with…
Outside his window, Josh watched, enamored, the colors of the sunset shifting, turning the sky orange, and then pink, and finally a bruised purple. He could almost forget where he…
Your health could seriously be jacked if you have the JAK2 gene. Why? You're likely affected by primary myelofibrosis, a genetic mishap that causes scarring in the bone marrow. Of…
En el 2009, una cepa desagradable de la gripe, la gripe porcina es decir, corrió alrededor del globo golpear a la gente hacia abajo como si fueran bolos. Los primeros…
You know what's awesome? Blogs. They're a great medium for people to: get out their thoughts in writing educate the public teach something about which they're passionate rant about politics…
Well, for anyone who's looking for information about neuromyelitis optica (NMO) or what’s also known as Devic’s disease or Devic’s syndrome—AND who happens to have a spare 45 minutes on…
Anyone born before 1955 probably remembers exactly where they were when President John F. Kennedy (JFK) was shot. I've heard people reminisce about that moment right down to what they…
Concientización ... Activismo... Abogacía Estas son sólo algunas de las palabras que usamos para exigir medidas a cualquier persona ya sea los líderes mundiales, las industrias, los amigos o la…
You're sitting across the desk from your doctor having just been told you have myasthenia gravis, or MG. Suddenly she starts dropping words like "diplopia" and "acetylcholine." She looks expectantly at…
Her name is Katelynn. Junior in high school. Third-year starter for her volleyball team, and a good one at that. She has it made... except for one thing. She suffers…
Recently, while looking for information about precocious puberty, I discovered a very cool site. It has a surprising, on-the-surface name: Hippo Education Blog (Apparently, Hippo’s short for Hippocrates, the Greek…
Hanna Gully era una niña con un sueño: que un día iba a viajar por el mundo, y se atreven a hacer todas las cosas que había establecido su mente…
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