Some illnesses elude even the most educated and experienced medical professionals. Yet, no matter how rare their disease, people need to be diagnosed quickly for an accurate treatment plan to be initiated.…
Tu salud es importante, muy importante, por lo cual, naturalmente, usted quiere tomar las mejores decisiones para su cuerpo. Sin embargo, a veces, que se vuelve delicado, especialmente…
Nicole Tardiff-Brooks just wants to be a mom to Colin, her sweet 4-year-old son. But Nicole has several diseases--lupus, Sjogren's disease, and severe neurological and liver damage. Colin knows Mommy is sick,…
That should be easy right? Unfortunately for some, like those with IPF, it is not that simple. Their lungs produce scar tissue that prevents the body from getting the oxygen…
Chiasma is conducting another clinical trial for Acromegaly patients, the MPOWERED study. “It is designed to compare the safety and effectiveness of an investigational new drug product, octreotide capsules, to…
Take things one day at a time. Know that the going isn't always easy and the path isn't always smooth. Your journey with your health is exactly that, a journey,…
I love my mom. She's on Facebook, obviously. Since I got sick, she's always sharing the latest Lyme news (obviously). She's the best and incredibly supportive of a disease that some…
Whether you’ve just been diagnosed with IPF, or you’ve been living with the diagnosis for a while now, there’s one website location that you should get to know: The Pulmonary…
1. Las enfermedades raras tienden a venir con nombres largos y difíciles. Para las muchas personas que no están familiarizados con ellos, pueden ser un bocado y puede que tenga…
Welcome to this week's Editor's Choice! Dysautonomia is misunderstood and neglected. This week we have two posts that could help you deal with this condition. We also have a heartwarming…
Just bringing some awareness to a disease you may not have heard of, especially since it only effects 1 in 2 million people. It's called Acquired Hypoprothrombinemia. This happens when the…
Pop quiz! What’s the difference between PF and IPF? (Other than an ‘I’?) Answer: Basically, nothing. PF, or pulmonary fibrosis, is a condition that causes scarring of the lungs and…
Illness isn't always pretty even when it's "invisible". What your peers might not see, your family and significant other probably has a little more insight to. In sickness and in…
So, you got the big ol' BD diagnosis, huh? And now you're trying to figure out how to live with it, right? Same here. See, Behcet's disease (or Behcet's syndrome) is…
When diagnosed with idiopathic pulmonary fibrosis (IPF), physical activity is pretty much out of the cards. Or is it? With IPF, heavy scarring in the lungs hardens the tissue and makes…
2015 Conferencia Nacional de la FDI se acerca rápidamente! Durante 3 días, Louisiana dará la bienvenida a las FDI y todos sus componentes y colaboradores. A partir del jueves, de…
Despite what strangers and acquaintances seem to think, I’m not a positive or even particularly friendly person. I rarely, if ever, look on the bright side—I don’t even consider literal…
This September #BlueUp4PF! September is IPF Awareness Month. Show your support and help by taking a picture of yourself sporting as much blue as possible and sharing it with the…
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,…
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