Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s Disease, is a degenerative motor neuron disease. Most of us have heard of it in large part due to the awareness…
A urea cycle disorder occurs when the body can't break down the ammonia that amino acids produce. Unchecked, ammonia is toxic. According to the National Urea Cycle Disorders Foundation, there…
I cannot get enough inspiration from Moms and Dads who are heroically trying to find answers when their children are sick—and doctors are scratching their heads! I read about a…
Ya know that “I’ve Fallen & I Can’t Get Up" joke? When you have postural tachycardia syndrome (POTS), jokes like that wear thin really, really, REALLY fast. What is POTS? Have…
To read part 1 of Teresa's post, click here. The sooner you treat [during an HAE attack], the better HAE meds work! The second stage of attacks is the swelling that is…
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…
Child development is natural and to be expected. Parents look forward to these milestone moments and usually remember every detail from these times. First word. First steps. One after the…
First described in 1882 by Heinrich Quincke, angioedema was regarded for more than one century as a rare disease. Subsequently, it was established that the hereditary form of the disease…
Mast cells are produced by bone marrow and are part of all tissues in the body. They are regulators of the immune system that contain storage sacs that contain active…
"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,…
If you are considering having children, it’s wise to consult with a genetic counselor for screening and testing before conception. Here’s why: there is a plethora of deadly and/or seriously…
Life can be overwhelming, especially when living with complex regional pain syndrome (CRPS). The continual pressure to look good, to perform well, and to compete for wealth and affection creates…
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…
Here at Patient Worthy, we believe in the power of patients. We know that sometimes information you get from someone who shares your disease is exactly the information you need. Hearing another…
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.…
Who is excited for another long weekend coming up this Monday?! To kick off your three-day weekend, take a look at these intriguing stories... Researchers have identified a superbug that…
Has your physical therapist been suggesting standing like a superhero as a cortisol-lowering treatment for your complex regional pain syndrome (CRPS)? Well, s/he might just be slumping her or his…
The death of a loved one is no doubt one of the most painful experiences in life. The grief, the confusion, and the emptiness that follows can sometimes feel unbearable.…
“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…
You may hate that these days everything seems to turn pink for the whole month of October. Or you may appreciate efforts to associate the color pink with Breast Cancer…
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…
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