Ayer leí un artículo publicado en la fibrosis quística Noticias Hoy por Patricia Silva, PhD, que fue causante de mucha reflexión. Los científicos han descubierto que hay una comunidad compartida…
Eleven seasons have come and gone (we are mid 12 now) and I remain a hard core Grey's Anatomy fan. I remember back in college for a public speaking class I…
I am a huge Malcolm Gladwell fan. Published in 2013, Gladwell's David and Goliath: Underdogs, Misfits, and the Art of Battling Giants speaks to those who are at a cross roads, feeling defeated,…
It's true—there's power in numbers, especially when it comes to living with a rare disease. Inside the hereditary angioedema (HAE) community, the term "HAE" is thrown around willy-nilly. It's a…
When it comes to getting a rare disease diagnosis, not one person will ever tell it you it was a walk in the park. As Kathryn (a gold level patient…
Never judge a book by it's cover, or a disease by it's name. Familial Mediterranean fever is not a chronic longing or fiery passion for the beaches along the coast of…
I have lost two cousins and a very inspiring friend to idiopathic pulmonary fibrosis (IPF). So I’m very aware that: There’s a genetic component to the disease (if more than…
Aplastic anemia. What is that? In simple terms, it's a condition that causes your body to cease making an adequate number of blood cells. It's a very serious condition, and…
Alexis Rosen fue diagnosticado con la enfermedad de Lyme crónica después de mucha confusión y mes de la búsqueda de respuestas. Ha comenzado ya la terapia con antibióticos IV. Después…
Kristina is the epitome of resilience in the face of Narcolepsy. Kristina was undiagnosed for years and was told her symptoms could be explained by depression and laziness. Now she…
Raising Awareness...Activism...Advocacy... Those are just some of the words we use to demand action from anyone whether it be world leaders, industries, friends or family. Every day we engage in…
Happy Friday Patient Worthians! This week we are highlighting a story of a man with cystic fibrosis, racing to breathe and spread awareness of exercise therapy for those with CF.…
Looking for a good, concise description of common variable immune deficiency (CVID)? You could do a lot worse than to watch this video from the Children’s Hospital of Pittsburgh of…
Have you ever thought about blinking? Right now, try not to blink for as long as you can... You blinked, didn't you? That's the function of an involuntary muscle. You…
Remember me? I’m the girl with big ambitions who refuses to allow my illnesses to get in the way. Within two months of being diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS),…
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