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…
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…
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…
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…
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…
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…
Shari Bender’s life didn’t exactly turn out the way she planned, but in reality, whose ever does? Bender’s daughter was born with hemophilia, a bleeding disorder that changed the lives…
When you have a rare disease, like dysautonomia, the walls of your world can constrict pretty quickly. Chances are good that you’d never even heard of your disease before your…
If you live in America, the first 100 articles during any basic Google search will be Western-centric. I’m not really condemning this. It’s expected that the media's focus will lean more toward…
People with treatment-resistant epilepsy (TRE)—and especially parents of children with the severe form of epilepsy called Lennox-Gastaut syndrome—can easily become discouraged as they speed through a growing list of anti-seizure…
The Ice Bucket Challenge was a huge success for raising awareness and funding for ALS research. But this year, there is a new fundraising effort for the debilitating, neurodegenerative disease called…
Press release - 10th July 2016 PW Partner: Breathe With Me, Strawfie Challenge When Danielle Cartwright filmed her daughter Talia May taking her medication and proudly posted the video online,…
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