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…
If we can accomplish big dreams, why wouldn’t we go after them? Just like Hannah Aspden of Raleigh, who was born without her left leg and lives with postural orthostatic…
¿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…
Maybe we should chart our own course in life like one sweet baby girl who was born with a rare skin disease called Epidermolysis Bullosa. Little Joella lives with the…
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…
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…
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…
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