Aaron es un graduado de la universidad de veinte-cuatro años de edad que viven en Alabama. Él es un empresario que se especializó en gestión de pequeñas empresas. Su padre…
Imagine tener un trastorno que controla sus movimientos. Un trastorno que causa contracciones musculares dolorosas que no se puede detener. Imagínese estar en una silla de ruedas debido a esto…
Frustration. It winds you up and can take so much out of you. Not only does it suck energy, but it also distracts and can steal quite a bit of time.…
January is not a surprising month. It takes people a while to remember to write the correct year, your Facebook feed is full of people going hard at the gym,…
It is always so heartwarming to read a great story. Especially, when someone beats the odds and overcomes something tremendous. Nicole Kelly's parents did not think they would see their…
Did you know there are more than 100 different types of liver disease? Also, that the liver is the second largest organ in the body? Both are true. Most people…
Before we take a look at a rare disease called Freidrich ataxia, or FA, let's first understand the meaning of the word "ataxia." Ataxia includes loss or lack of muscle…
Do you ever have those moments where you're doing something that seems very routine, but then you realize with sudden clarity how much of it is affected by your chronic…
What makes a complex subject like postural orthostatic, tachycardia syndrome (POTS) easy to understand? For me, good intentions are a large part of the equation. That’s one reason I had high…
Epidermolysis bullosa (EB) is a disorder characterized by blistering of the skin. It also affects all the body's mucous membranes, so while the blisters may be visible, the person's lips, tongue, mouth,…
For anyone living with severe chronic pain from Complex Regional Pain Syndrome (CRPS), the best possible gift they could receive—short of a cure—would be a good treatment. To date, however,…
Conozcamos a la colaboradora de PatientWorthy mas reciente! Nikole es una mamá con experiencia profesional en la educación y una increíble visión de las realidades que muchos pacientes con enfermedades…
‘Tis the season for caring and sharing, and I know of no other mother and family who need it more—not just compassion and care, but also effective treatments for her…
If this holiday season finds you with extra love to share, then I hope can share a little bit to help fund research for a rare disease so that others…
Hey, a happy holidays meme without using red and green! Here’s wishing you peace and love during the holidays. Even if you don’t celebrate a specific holiday, I hope the…
¿Sabías que hay más de 7.000 enfermedades raras, y 1 de cada 10 estadounidenses tiene uno? Cuando usted es parte de un pequeño grupo de pacientes, es difícil darse a…
Hansen's disease, formerly called leprosy, is a long-lasting bacterial infection that is treatable with antibiotics. Patients are able to recover from the infection and lead normal lives. The past, however, was…
Every year, approximately 6,000 people in the United States are diagnosed with amyotrophic lateral sclerosis, more commonly known as ALS. This disease is a degenerative condition that slowly kills off…
The next time you’re having a crappy day, think of the 1000s of kids across the globe who are suffering because they have juvenile idiopathic arthritis (JIA). JIA is one…
'' Mover a la costa oeste ha sido tan divertido; Tenía mi pueblo, mi equipo de vuelta al este. Tuvimos una clara mano corta y tengo la suerte de que…
A los 23 años, Jessie Brenholt debe ser ocupado planeando el resto de su vida, como el matrimonio y tener una familia. En su lugar, el graduado 2012 de Le…
As the wild, fractious year of 2016 claws it’s way to the finish line, we could really, really, REALLY use some good news. In a year that took away so…
Wendy sits at the corner of a polished conference table. She’s timid by nature—a little mousy. Her voice squeaks out responses as she participates in the discussion. The conference she’s attending…
Last summer, I was sitting on my deck, reading the NY Daily News (don't judge me; I've been reading it since I was six years old), and I came upon…
What is it about inspiration? Where does it come from? If you are living with idiopathic pulmonary fibrosis (IPF), you may want to feel moved, and then to use that…
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