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…
I think most of us have realized by now that being a special snowflake doesn’t always feel that special. As much as I’m a proponent of celebrating our differences, when it…
Conozca a TZ la cebra del FDI! #namethezebra Os contamos la conferencia de este año iba a ser muy emocionante en nuestro anterior post, 2 razones por las que la…
Welcome to this week's Editor's Choice! If you're currently in the US, then we know it's hot outside-- but we still wanted you to get out there and raise awareness…
It is my sincere hope that everyone has a life full of moments that are so great they take your breath away and remain in your memory forever. Unfortunately there are…
Ok, this is different. Usually when we’re reporting on a new drug study or talking about medication, we’re all about better living through chemicals. So, it’s a little weird to…
Everything that you do is more impressive than if the average person did it, because you're not average. Everyday you're combating a rare disease on top everything else. Everything you…
For some cases of dysautonomia, doctors suggest increasing the salt intake in your diet. Doing so may help raise your blood pressure to alleviate light headedness, and improve fatigue level…
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