The thing about celebrities is that, because we place them on huge pedestals of perfection and idolization, we can't imagine them living with any kind of "imperfection." We can't help…
Communication is key, and it's extra-important for patients with rare diseases. Be sure to communicate with your doctors; how you're feeling and what you want to know. Communicate with your…
Picture this: You walk into a lab and find these slimy-looking, colorful blobs sitting in petri dishes. You get closer. Closer. The blobs take shape; they are livers, kidneys, and…
Pinterest: Home of DIY decorations, hair tips, cake recipes, and POTS treatment suggestions... ...Weren’t expecting that last one, were you? In addition to memes and instructions for upcycling vintage suitcases,…
Franklin Gutiérrez está de vuelta! Después de tratar con el largo camino de la recuperación de su diagnóstico de la espondilitis anquilosante, que detallamos aquí, Gutiérrez hizo su primera MLB…
As much as we want the letters DBHD to stand for “Daily Better Health, Dearie,” those very rare people, whose genetic makeup includes a particular mutation, will translate the acronym more correctly…
When it Rains look for rainbows. When it's dark Look for stars. Just some positive words for those going through rough times. It may seem like everything is dark now,…
Let’s do a quick poll. How many times have you been talking to the curious or well-meaning about how you live with a rare disease and gotten this question: “What does…
Acquired Hypoprothrombinemia is a disease that only effects about 1 in 2 million people. A.H. is when the body is lacking the protein Prothrombin that synthesizes Vitamin K and causes blood…
We get it. There’s nothing cute about a medical ID bracelet. But if you’re someone living with a rare condition like hemophilia, it becomes less a fashion accessory, and more…
Recently, I wrote a post about the use of complimentary therapies, which are non-medication therapies you can use to help support your body. While things like acupuncture and yoga are…
Julia Domenick ha pasado casi cinco años cuidando a su marido Andrew "dibujó" después de que de repente se enfermó. "Dibujó simplemente hubiera cumplido 50 años en rehabilitación! Nunca pensamos…
While it wouldn’t be fair to describe hemophilia B as the red-headed stepchild of the bleeding disorder community, it is far rarer than the more common hemophilia A, and bleeds…
IPF or Idiomatic Pulmonary Fibrosis is a disease that causes scarring and stiffness in the lungs making it hard for the lungs to move oxygen into the bloodstream, the brain…
Casey Noe is living with a rare disease that affects almost every aspect of her life, but she doesn't let it stop her from helping others who also suffer from…
This September is IPF Awareness Month. Write to your governor, mayor or city council member and proclaim it for your city or state. Bring your community together and make a…
Do you know the most common reason people are hospitalized? No, it's not a heart attack. It's not pneumonia. It's childbirth! Every year in the United States, about 4 million…
Claire Tarr is making a name for herself by moving forward. Diagnosed at 30 years old with idiopathic pulmonary arterial hypertension (IPAH), Tarr refuses to freeze in fear. “I try…
Les dijimos por qué la conferencia de este año iba a ser muy emocionante en nuestro anterior post, 2 razones por las que la Conferencia Nacional 2015 IDF es aún…
Have you been following the news out of Europe recently? Between “Brexit” and the ongoing clashes over immigration, it would appear the continent’s fragile unity is coming apart before our…
This September is IPF Awareness Month. The slogan this year for IPFWorld.com is Breath of Hope! Help raise awareness by Blowing Soap Bubbles, or dress up in blue and post…
I love the Golden Girls, and oddly enough, I was watching one of my favorite episodes the day before I started writing this post. The episode is the second of…
September is IPF Awareness Month. Take a picture of yourself blowing bubbles and share them to help the cause! Use #IPF and #IPFWorld and challenge the world to join in!…
You're sitting across the table with a friend having a nice conversation over dinner, when you notice something's wrong: half of your friend's face is drooping. Because you're not a…
Active listening is important. Your health care provider needs to know not only your symptoms but also your concerns so that they can adequately address them. Arguably this is even…
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