Predicting the disease progression of idiopathic pulmonary fibrosis (IPF) is extremely important, as this condition progresses differently depending on the affected individual. Knowing if one has a poor outcome while…
It is estimated that about 10% of people in the United States have rare diseases. But what makes a disease rare? How does this distinction affect diagnosis and treatment?…
Maybe you remember the day of your diagnosis: shocking, confusing, chaotic. Realizing the news will change your life, but not quite knowing how. Jessie Ace was 22 years old, finishing…
Netflix debuted a documentary series this month called 'Diagnosis' -- based on a New York Times Magazine column -- which follows individuals with or caregiving for patients with a mysterious,…
You may know her from movies like Legally Blonde, Cruel Intentions, and Hellboy - but now Hollywood star Selma Blair has a new role she's tackling: multiple sclerosis advocate. Just…
Dr Ronny Drapkin, a professor at the University of Pennsylvania says, “One of the things I tell women is that nobody knows your body as well as you do. If…
Cancer treatment is most successful when the cancer can be detected early. The earlier the better. According to Newsweek, a new screening test may be able to detect cancer faster…
Confession time: I was a Trekkie. Yes, I lusted after Captain Kirk. But deep down my heart belonged to Bones, the smack-talking ship's chief medical officer who often saved the…
Senator McCain has been a prisoner of war, has had a history of melanoma, and is 80 years old, so last Friday’s routine check-up didn’t end up being so routine.…
According to the Daily Mail, Clare Fray has alpha-1 antitrypsin deficiency. But for years she thought her symptoms were just a part of normal life. She suffered from numerous chest…
I was discussing with my sister’s husband a presentation on what to do when diagnosed with a chronic illness. I was going to present this to People with Parkinson’s (PwP),…
Si las enfermedades raras estaban participando en un concurso de belleza, donde la "belleza" significa "poco conocido", "mal entendido", y "casi imposible de diagnosticar" -Ehlers-Danlos (EDS) sería a la altura…
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…
Kathy Antilla recuerda el momento en que escuchó a su hijo, Isaac, decir esas palabras que ella pensó que nunca oiría: "¡Mamá! ¡Mírame! Soy como un niño normal ahora." En…
Q: What does an autoimmune disease that primarily affects tear glands and salivary glands have in common with a James Clavell novel? A: Nothing, really—other than the fact that the…
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…
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…
Have you ever gone to WebMD's symptom checker for a simple pain in your stomach or a weird patch on your skin? I know I have, and more often than…
I often find myself perusing the interwebs while at work (strictly for research purposes ?) and, like an informed citizen, I was catching up on some news. I stumbled on this lovely…
¿Y ahora qué? Llegaste al doctor para hacerte un chequeo y sales con un diagnostico que cambia tu vida entera. Sea, Distonía, Acromegalia, Angioedema Hereditario (AEH) o la enfermedad de…
Mary Vicencia knows what it’s like to be sick as a dog. For a while, she was basically an expert in feeling downright bad. In fact, she’s a lot like…
Dominick “Dom-the-Bomb” Lukowski has always loved baseball. But during his freshman year in high school, he was shocked to notice that he barely had the strength to throw a ball…
If rare diseases were participating in a beauty pageant—where “beauty” means “little known,” “poorly understood,” and “damn near impossible to diagnose”—Ehlers-Danlos Syndrome (EDS) would be right up there among the…
Ok, it’s time for an experiment. Grab a random group of people off the street and stick them in a room (make sure to ask first, please). Ask them to…
People often debate whether things in life happen by fate, or by chance As explained on the UC Neuroscience website, all Jim knows is that a lot of coincidences had…
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