Los científicos han localizado descubrimiento clave en la categoría de las Enfermedades Raras Un gen que puede jugar un papel en la solución de los misterios de enfermedades autoinmunes como…
When people hear the word “Parkinson’s disease” (PD), they are likely to conjure an image of trembling and unsteady gait. But Parkinson’s disease has many manifestations that strike individuals unequally…
Fifty years ago, a baby born at 22 weeks didn't have a very significant chance for survival. It wasn't until the early 1970s that specialized equipment was developed to take…
Life is hard, Breathing should be the easy part. Breathing should be the easiest thing to do in life. It is an automatic body function that we do without thought.…
Like most little boys, six-year-old Maddox Klossner loves being outside and in constant motion. Maddox has cerebral palsy as well as a form of epilepsy called Lennox-Gastaut Syndrome; both conditions were…
To all the people with narcolepsy out there: how tired are you of having people make light of your condition? The jokes, the playfulness, the jabs—it all gets a little…
Cualquier persona diagnosticada con una enfermedad crónica tiene dos opciones. Opción 1: Vive la vida sin hacer nada y esperar a que llegue el final O Opción 2: Aprender lo…
Do you ever have those days where you're trying so hard to put one foot in front of the other, and then someone has the balls to ask you why…
IPF Awareness Month is this September! Go to these links to get involved: Blowing Soap Bubbles #BlueUp4PF Proclaim it for your city or state. #WhereInTheWorldIsIPF Here are some links for…
When you believe in fairy tales, anything is possible. When you believe in modern medicine, there are some limitations. However, the new use of low-dose naltrexone might seem like a…
This quote is by Patient Worthy Contributor Lisa D. check out some of her articles to learn more about her story: Meet Lisa D. The Best Thing You Can Do…
It's no secret that a diagnosis of idiopathic pulmonary fibrosis, or IPF, can lead to a lot of STRESS. Of course, what is not good for chronic illnesses like IPF?…
It's no secret that Scrubs helped me get through Lyme treatment, as it is surprisingly profound. In Season 5, Episode 6 there is a very pleasant older woman who has…
¿Crees que sabes todo lo que hay que saber sobre la espondilitis anquilosante (EA)? Piensa otra vez. Una nueva investigación ha revelado que las personas con AS tienen un mayor…
Could slowing the progression of Huntington's Disease (HD) be as simple as using a really bright light? Not quite. That's an oversimplification, but let's break it down. In April, researchers…
Where in the world is IPF? To help raise awareness for IPF this September, take a picture of yourself at a popular destination and use that location to help raise…
Kids with rare diseases will often be dealing with doctors for their entire lives and helping them find their voice along the way is important. Letting your child speak to…
Anyone living with acromegaly should understand their treatment options and why they're being proposed. The UCLA Pituitary Tumor Program has a video outlining some of the treatment considerations for acromegaly. It's…
Síndrome de Muckle-Wells Es raro. Es real. Está listo para causar inflamación excesiva a lo largo de todo el cuerpo con síntomas tales como fiebre, artritis, y malestar general. Esta…
Welcome to this week's Editor's Choice! Mysthenia Gravis has to be treated delicately, as it's unpredictable and often incredibly painful. That's why the blogger we've highlighted below wants you to…
Do you know how rare diseases are classified as such in the United States? If a disease affects 200,000 people or fewer, it is considered "rare." Acromegaly, cystinosis, and Gaucher…
Bravery is something rare disease patients know a lot about. They may be scared before a procedure, and understandably so, but more than likely they've done their research and they're…
"You'll be fine. You're just depressed." How many times have you heard a doctor tell you that—when you KNOW something is seriously wrong? Marilyn heard the exact same thing. "I ain't…
I love 2001: A Space Odyssey as much as the next person, but sorry, not sorry, despite what it and so many other movies would lead you to think, the…
Inmunodeficiencia Primaria y Disautonomía - Vivir con una enfermedad raraIlana Jacqueline se parece a una mujer joven perfectamente sana, pero las apariencias pueden ser engañosas. Tardó 19 años para que…
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