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,…
A lot of us fight Lyme the only ways that are available to us, be it antibiotics, homepathy or other alternative routes. However, when a kid has chronic Lyme, he…
Welcome to this week's Editor's Choice Patient Worthians! This week, we want to spread some info on what it feels like to actually live with rare disease. Not just about…
Most people don't think about illnesses or diseases unless they're directly affected. After all, who wants to worry about things that will likely never be a problem? Rare diseases obviously do not get much attention…
Alejandra Carasa arrived in the United States with one suitcase and a thirst for success. Cuban-born Alejandra has been living with T-cell cutaneous lymphoma, also known as mycosis fungoides (MF), since 1999. MF…
I read an article about a woman in China who chose to end her life so that her son, who suffers from ankylosing spondylitis (AS), could receive an insurance payout…
Julia Smith was diagnosed with Glanzmann thrombasthenia (GT) at the tender young age of six months through a series of fortunate events. First, her mother Helen, noticed her infant bruised very…
By 2013, 17 states plus the territory of Washington, DC legalized or formed legislation around medical marijuana. A study by the University of Georgia suggests that this change caused about a…
If you’re a fan of country music, you might recognize Joe Nichols’ name because of chart-busting hits like, “Gimmie That Girl,” “Sunny and 75,” and “Freaks Like Me." But Nichols…
Just getting an accurate diagnosis can be a tremendous challenge for people living with the connective tissue disorders that fall under the Ehlers-Danlos Syndrome umbrella. Common misdiagnoses include fibromyalgia, arthritis,…
Having a rare disease like Addison’s is enough of a challenge for most people. Addison’s disease is a disorder of the adrenal glands which causes extreme fatigue. Now, imagine having…
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