Nice guys finish last? Hardly. Especially if we’re talking about Vanessa Smith, a mother of six, and Peter Brouwer, a father living with primary sclerosing cholangitis (PSC) who needed a…
I can honestly say that I have never gone to a doctor’s appointment and remembered everything I wanted to ask—not even when the appointment is the most basic of physicals.…
Meet Emily Deaton, de 21 años, de Mechanicsville, Virginia. Al igual que muchas personas con enfermedades invisibles, el viaje de Emily a un diagnóstico preciso era más de una pesadilla…
La enfermedad y la depresión. Con demasiada frecuencia, después de haber sido diagnosticado con una enfermedad crónica, los pacientes se dan por vencidos. Se retiran. Ellos dejan de intentarlo. Ellos…
Are you a concerned parent or loved one of a child who has Juvenile Idiopathic Arthritis (JIA)? Well, you’ve come to the right place! I read such an uplifting online…
Es injusto, pero Hollywood cree que la narcolepsia es divertido. Una y otra vez, los personajes que sufren de este trastorno neurológico raro son retratados como bufones, cayendo la cara…
El 90-95% de las personas que viven con la sarcoidosis, la enfermedad afecta a los pulmones. A medida que crecen granulomas a través de los órganos, que pueden experimentar tos,…
It's time to lift a very rare condition called Non-24 Sleep-Wake Disorder, or Non-24, from the shadows so that those who are living with it can be better understood. For…
Well, this is the perfect case of having too much technical, clinical information for some, but not being able to completely comprehend what’s going on--for those of us who don't have…
If you, or a member of your family, is affected by a congenital disorder of glycosylation, or CDG, you are most likely familiar with the terms, definitions, and physical impact…
¿Qué hicieron el magnate naviero griego Aristóteles Onassis, el actor ganador de un Oscar Sir Lawrence Olivier, y una niña de cuatro años llamada Hattie, tienen en común? Todos ellos…
I met a woman at a patient conference last year who confided she had just been diagnosed with narcolepsy. She said because she knew next to nothing about the disorder, she…
Postural orthostatic tachycardia syndrome does not exactly roll off the tongue, so most people refer to it as POTS. It's characterized by a sudden change of blood pressure that happens…
¿Quién sabía que la distonía y tenis van mano a mano ?! Por veinte años de edad, Josh, es un partido en el cielo. Él ha estado fascinado con tenis…
The above photo is of Kristina by Sandro Georgi Photography. Check out Kristina's story of living with narcolepsy by clicking here. If you visit Patient Worthy or our Facebook page, then…
Este es el escenario: una mujer y un hombre entran a la sala de emergencia con los mismos síntomas. Ambos tienen un terrible dolor en la región abdominal. El hombre…
El hecho de que Halloween ha pasado no significa hemos terminado de hablar de la cirugía cerebral. Specifically, deep brain stimulation therapy. No, esto no es algo así como el…
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…
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…
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…
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…
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…
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…
If you are the parent of a child who has a rare disease, you know how difficult it can be to explain why they can and can't do certain things.…
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