Serendipity (n): la aparición y el desarrollo de los acontecimientos por casualidad en una manera feliz o beneficioso. Como muchos de ustedes probablemente saben, el viaje a un diagnóstico cistinosis…
Una enfermedad incurable que causa espasmos musculares dolorosos acaba de recibir $ 45,000 más cerca de una cura. La distonía es una condición incómoda que hace que los músculos se…
Es una especie de una insignia de honor cuando una enfermedad rara consigue tiempo de emisión en un programa de televisión a nivel internacional querida. Y tal vez los médicos…
Happy Post-USA Election Day Friends! TGIF Patient Worthians, am I right?! Hopefully this weekend is full of rest, relaxation and positivity! Maybe just avoid social media for a while and hang…
The human body is a magnificent creation. Everything works together as one big “machine.” However, from time to time for some unknown reasons we may develop a glitch that alters…
You couldn't breathe, you had swollen lymph nodes and a cough that would not go away. You go to the doctor and had some test done. You are told you have…
I don’t know what it is about hereditary angioedema (HAE) that makes people with it have a really great sense of humor, but they do. Maybe it’s the absurdity of…
Parents and guardians of a child with chronic illness have it very hard, much harder than most people understand. Listening and reading your stories, I have come to understand that…
Multiple. System. Atrophy. Even if you know nothing about MSA, stringing those three words together doesn't sound promising. MSA is a neurodegenerative disorder that's characterized by autonomic nervous system failure.…
Ok, es el momento para un experimento. Coge un grupo aleatorio de gente de la calle y pegarlos en una habitación (asegúrese de preguntar en primer lugar, por favor). Pídales…
For so many people, hearing the word "normal" come out of a doctor's mouth can be comforting. But for Chloe Christos, now 27 and diagnosed with von Willebrand disease (vWD), this…
Australian scientists have developed a new blood test that has potential to identify Parkinson’s disease (PD) (early) in people, which is enabling doctors to better treat their patients who have…
It was a match made in heaven when the Homecoming King fell in love with the Homecoming Queen. Several years after they accepted their crowns, they got married and planned…
Have you been looking for a resource on Ehlers-Danlos syndrome (EDS)? If so, you'll know that it's difficult because EDS is a rare inherited condition, and there aren’t many credible resources to…
Exercising with CRPS can be beyond difficult, but I’m sure everyone from your doctor to your mother has encouraged you to do it. Why? CRPS already causes you pain, and…
Miracles never cease to amaze me. And quite frankly, it’s been a long time since I’ve been convinced that one actually has happened—although in theory, I welcome miracles every day!…
When you think of the Mediterranean, you probably picture sun-kissed white sand beaches, azure blue waters, and the exotic coastlines of Italy, Greece, and Morocco. What you probably don’t picture…
Puede que estemos acercando a la temporada de vacaciones, pero no hay Ho! ¡Ho! ¡Ho! en HFHo. La mayoría de la gente ni siquiera se puede pronunciarlo, ni mucho menos…
Being a parent is tough. We never know if we’re on the right track. Too many thoughts of self-criticism come to mind: Am I doing this right? Do I practice…
As if there wasn't enough about Glut1 deficiency to be frustrated with, scientists are now saying there are more symptoms to the condition than they were originally aware of. In…
Life is one wild ride, isn’t it? The greatest surprises of life may be just around the corner. My life was changed by one little red radio flyer wagon. An…
Pediatric ulcerative colitis is an inflammation of the lining of the colon and rectum. The inflammation can wear away the lining, causing ulcers to form, and patients suffer from chronic…
Fields Taylor was 15 weeks old when she had her first seizure. They continued for months as doctors were unable to determine what was wrong. Then another seizure led to more tests…
¿No te odio, haga clic en el cebo? ¡Hago! Mientras que la búsqueda de información real acerca de la Enfermedad de Behcet - porque, lo necesitamos - me encontré con…
In 1964, Henri Hers was studying Pompe disease when he suggested that the absence of lysosomal enzymes could be responsible for several other conditions. He was right, and a category of…
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