Jake Conaway aprendió lo peligroso puede ser el angioedema hereditario (AEH) cuando tenía sólo siete años de edad. Fue entonces cuando su padre murió a causa de la condición genética…
Happy Friday Patient Worthians! Do you wish you can take a day off from your rare disease? What about when it seems like it's getting to be too much and…
Wilson disease is one of those conditions that creeps up on the patient. The disease causes the body to be unable to properly metabolize copper, which as a result, builds…
Central precocious puberty used to be much rarer than it is today. Doctors are seeing more and more patients who begin to develop too early, and they can't figure out…
I’ve been known to doze off occasionally at odd times. My dad does this and so did my grandfather. And I know that's one of the symptoms of narcolepsy. My…
If you want to learn more about cryopyrin-associated periodic syndromes (CAPS), but don't know where to go, have no fear! We have found the perfect place for you! Systemic Autoinflammatory…
Cuando se le diagnostica la espondilitis anquilosante (EA), la última cosa que quiere hacer es trabajar a cabo. A menos que, por supuesto, usted es Nate Lewnes. Nate ya no…
Colleen and Sam were shocked when their sweet baby girl, Quinn, was born a few weeks early. She weighed only 3 lbs 6oz and was immediately taken to the neonatal…
There’s a CRPS clinical trial being listed on Craigslist. Not kidding. You can check it out here. Now, am I the only one who finds that really odd? When I…
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…
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