You may remember AS warrior Charis from our interview entitled "Move Over Barbie. This is the Model Little Girls Should Idolize". She discussed her journey with Ankylosing Spondylitis, detailing her…
For the last one and a half years, I’ve been taking a mindfulness meditation class to help reduce stress and have recently “graduated” to a master class, which I’m enjoying and…
Back in 2012, the Minnesota Department of Health published a helpful fact sheet on methylmalonic acidemia (MMA). What I liked about it is that it’s very straightforward and to the…
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…
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…
I read an amazingly interesting article about a guy, who is living with Type ll diabetes and was diagnosed with non-alcoholic fatty liver disease (NAFLD). Seems he’s been through hell and…
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…
Ser diagnosticado con una enfermedad neurológica crónica puede ser vindicación después de años de incontables visitas de especialistas, pruebas e investigaciones. Sin embargo, existe todavía un tipo de período de…
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…
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.…
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…
Eventually, we reach a place in life where making a meaningful impact in the world becomes a motivating force. We know we’re there when we simply want to make something…
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