On June 23, 201, a little boy named Jackson was born. He weighed in at a healthy seven pounds, three ounces, and was 20.5 inches long, and his parents were…
¿Por qué les importa tanto las enfermedades raras a las compañías farmacéuticas? Congreso. La FDA. Defensores de los pacientes. Y Venture Philanthropy. Cuando se trata de enfermedades raras, los medicamentos…
Eisenmenger syndrome is a ventricular septum defect, which is a complication of a congenital heart defect, including atrial septal defects, ventricular septal defects, patent ductus arteriosus, and more complex types of acyanotic heart disease.…
Conozcamos a Yoni Maisel – un paciente con una enfermedad rara, un activista y blogger. Su meta: crear conciencia sobre las enfermedades raras y ayudar a los demás a través…
Con el tiempo, se habrán dado cuenta de que tiene dolor en el cuello, y que está más rígido en la mañana de lo que son por la tarde. El…
We are halfway through 2016 and we want to thank you Patient Worthians, old and new, for reading, sharing your stories, and supporting our patient contributors and writers! As a…
San Angelo Live reports Keelie Brydson first noticed something was wrong in the fourth grade when, she says, "my eyelid would be really droopy." Turns out that Keelie has myasthenia…
Ehlers-Danlos Syndrome is a complex genetic disorder that is caused by defects in the body's structural proteins, also known as collagen. Hypermobility of the joints is one of the most…
In the past, a diagnosis of Huntington's disease offered the patient absolutely no hope. It was understood that a downward trajectory was the only way the disease would play out,…
Jeff Joseph. Record Spotlight reports he’s not like every 24-year-old trying to figure their way through this so-called “real world.” He’s different—in challenging ways and in freakin’ cool ways. Joseph…
Podrias llevar un estilo de vida más saludable y ayudar a disminuir algunos de los síntomas de la espondilitis anquilosante y la frecuencia de los brotes siguiendo estos pasos. 1.…
There's good news for people living with carnitine palmitoyltransferase (CPT) deficiency and their caregivers! Ultragenyx recently released data from an open-label study of the treatment triheptanoin. In the study, five infants…
Every day, millions of people wake up hoping that today will be a good day—that today, the pain will be at a bearable level. Myasthenia gravis (MG) patients know the high…
The diabetes drug pioglitazone, has an unexpected side effect that brings hope to patients with chronic granulomatous disease (CGD) and other primary immunodeficiency diseases. This drug boosts the production of ROS in…
The last thing any parent wants to hear is that their infant or child has been diagnosed with congenital myasthenia gravis, a disease that causes various degrees of weakness in the…
Hitting up the club? Try hitting up the couch. That’s the reality of life with a rare disease. Forget marathons, Grey Goose, and stilettos. Your life is now Netflix, antacids,…
When you have a chronic illness, "wild" nights tend to become a thing of the past. No more late nights at the club, hanging out until midnight in the middle…
When you have a rare disease, it sometimes becomes all-consuming. It's hard not to focus on all the things you can't do now, or wish you could return to the…
Los médicos de Global Hospital en Mumbai, India, han logrado una hazaña poco común en la cirugía espinal. Por primera vez, un experto equipo de cirujanos realizaron la cirugía de…
What if you had a super-rare disease and thought you were the only one on the planet who had it? What if your medical team suspected you might be right about…
Muchas personas con angioedema hereditario (AEH) le dirá que realmente no están seguros de qué causa sus ataques, pero pueden identificar algunos factores desencadenantes comunes, tales como el estrés, la…
Viviendo el sueño como un futuro de béisbol Destacado, Franklin Gutiérrez, alias "Guti" estaba en la cima del mundo. En 2000 los Indios de Cleveland firmaron al agente libre aficionado…
When UK cyclist Andrew Beale decided he was going to throw his support behind The Dystonia Society, he didn't waste time getting sponsors. With nearly $400 pledged, he was disappointed to learn that…
Researchers around the world are constantly looking for new leads in combating chronic illnesses, and they’re making progress all the time. But it’s not often they make a discovery like…
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