Jules Perez-Montiforte was described by her family and friends as the center of the party. Just walking into a room, she would illuminate everyone with a smile. But even though IPF…
Autumn is going to be a fun time for people interested in supporting essential research for amyloidosis. Amyloidosis is a group of about 15 rare, progressive, and incurable diseases of…
For a disease affecting so few people, amyotrophic lateral sclerosis (or ALS) has a somewhat higher than normal profile. That’s due in small part to the ubiquitous “Ice Bucket Challenge”…
When people are diagnosed with amyotrophic lateral sclerosis (ALS), it’s overwhelming for both patients and their loved ones because it does not discriminate and can strike at any time. This…
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.…
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,…
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…
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…
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…
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…
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…
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…
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…
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,…
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…
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…
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…
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…
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…
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…
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…
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…
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