According to PW writer Kathy, there was a shining star at Rare Disease Week on Capitol Hill's Rare Artist Reception. Olivia is the youngest of four daughters. She was diagnosed…
I'm sure you've heard these popular phrases: Don't judge a book by its cover Looks can be deceiving You never know what someone else is going through until you walk…
Okay, you know what’s funny? I literally just wrote an article "The Paleo Diet and Narcolepsy: What You Need To Know" about a “Paleo Narco,” a young woman with narcolepsy…
If you're curious about narcolepsy from a first-person perspective, there's an awesome YouTube channel you should subscribe to. Sleepy Sarah Elizabeth is creating a video journal detailing her struggles with…
The Paleo Diet—which has the hunter-gatherer food aesthetic of fruits, vegetables, and lean proteins—has gotten a whole spectrum of attention. We’re talking everything from obsessed proponents to frantic debunkers, and all the…
It's a new year! You know what that means? TONS of people at the gym. Do you know what else that means? TONS of germs at the gym. When you're…
"The truth is, we don't always know how most medicines are going to work with patients until we prescribe it to them." This is according to Dr. Lynn Webster, who formerly…
On Date: Mon, 12 Sep 2005 20:55:24 -0000 Sleepymoon posted the following message to readers followed by 128 different versions of You Might Have Narcolepsy IF... Are we really…
Let's face it, it's not a secret that phones and tablets are taking over our lives! Even the littlest among us are showing a shocking attachment to the glowing screens.…
In a post just in time for last year's Sjögren’s Awareness Month, blogger Michelle Traub, who happens to have Sjögren’s herself, offered seven tips she uses to live everyday with a…
When you have pulmonary hypertension (PH), sometimes the idea of just walking up stairs can be daunting. Kayleigh Johnson, who has been living with pulmonary arterial hypertension (PAH) for years, is going…
Okay, call me crazy. Call me SNARKY, but this is ridiculous! Here’s another perfect example of: Not having all of the facts! OR Stupidity that almost gets an innocent young…
Recently I have been fortunate enough to be tested for remission from chronic Lyme disease. For those of you who haven't heard of the latest Lyme Antigen Test, it uses Nanotrap®…
I read an article about pregnancy screening for disabilities recently. In it, there was one quote from a mom who has Ehlers-Danlos syndrome (EDS), an inherited condition which affects connective tissue and causes…
What strikes me about artist, David Mortimer's, exhibition is his use of "glitter." "[Glitter] is a symbol of my life in a way. It's about trying to cover up, glamorize,…
When it comes to the different types of dysautonomia, there are often prescriptions doctors try (like Midodrine) to relieve some of the symptoms. But for me, the side effects outweighed the…
Some teenagers have trouble staying awake in class--but most of them have a fairly normal excuse: they stayed up too late. Then there are teens who actually do have a…
If ever there was a “girl next door,” it’s Ashley Coleman, a beautiful, bright-eyed-blonde and very active young woman! She’s got the smile of a Homecoming Queen! Even though Ashley…
The Corr family has had a tough year. Tough, sure, but equally as joyous. They’ve been adjusting to life with their year oldest daughter Harriet. Soon after Harriet was born came…
Have you ever heard your voice on a recording and thought, "Is that what I really sound like?" You rehearse exactly what you want to say, repetitively hitting the restart…
Newly diagnosed patients and those who have been living with their illness(es) for a long time cope with their situation in very different ways. Some like to read while others…
PatientWorthy is teaming up with CysticLife.org to spotlight some of the members in their awesome community! CysticLife.org sprang from a blog started by CF patient, Ronnie Sharpe, to track his life…
You may not know this, but a bean-sized gland, located in your brain (behind your nose and between your ears) secretes hormones that influence almost all of your body. What…
I love desserts. Its “stressed” spelled backwards. There is just something relieving about being able to sink your teeth into something sweet. But when diagnosed with a chronic illness, often…
Patient Worthy wants to give a shout out to Lisa D.! Congratulations on landing the #4 spot in all of AMAZON KINDLE and a 5 star rating. Her book is also…
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