"Hardships often prepare ordinary people for an extraordinary destiny." -C.S. Lewis People with rare diseases are not ordinary people. The hardships they endure turn them into extraordinary individuals because they…
When Angela Clarke was just hitting the teenage years, she craved the attention wearing high heels would bring her--plus, being short in stature, she saw them as a quick fix to…
If you think about the definition of rare, you realize just how accurately it describes people with rare diseases. You are one in a million and you are precious to…
People with ankylosing spondylitis (AS) already have a lot on their plates trying to cope with the symptoms of this inflammatory disorder that mainly affects the spine. In severe cases, vertebrae…
“She had blue skin, And so did he. He kept it hid And so did she. They searched for blue Their whole life through, Then passed right by- And never…
Sixteen-year-old Sydney Rohmann has a number of rare conditions that have left her in a wheelchair. Among them are Ehlers-Danlos syndrome (EDS) and postural orthostatic tachycardia syndrome (POTS). She has even had brain…
Q: When is asthma not just asthma? A: When it's a symptom of Churg-Strauss syndrome. Five and a half years ago, in January 2011, Carole Cordum thought that her asthma was…
Píldoras y Parfaits: ¿Cómo probióticos podrían hacer la vida con CVID un poco más fácil. Entre las infecciones lejos demasiado frecuentes asociados con ICV y los problemas gastrointestinales recurrentes, muchos…
Rachel Ablondi and her husband David knew from the start their infant son Andrew was having trouble meeting common baby-milestones. But their giant wake-up call occurred during a party celebrating…
I hate the sound of the word “lesion.” I think it ranks right up there with the word “moist” in icky-ness. And I’m willing to guess men with axial spondyloarthritis…
Amanda luchó durante años para comprender el dolor y la hinchazón que se mantuvo experimentar. Sus médicos no podía entender era incorrecto y que nunca supo por qué la garganta…
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…
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