For many cystic fibrosis (CF) patients who grew up in years past, one of the greatest hurdles and frustrations was being told they couldn’t do something, especially sports or physical activities. Sometimes…
Dystonia causes involuntary muscle contractions and can result in abnormal posture. There are a number of different types of dystonia, and there is no known cure. Parkinson's disease (PD) is…
In the past, 14-year-old Louise Stewart-Scott, was used to flying through the air and across the mat during her gymnastic routines. But, at the age of eight, she was diagnosed…
Researchers in rare disease find it very challenging to find specimens. The Newborn Screening Translational Research Network (NBSTRN), has developed an easy way for researchers to access specimens through the…
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…
Meet Patient Worthy’s newest contributor! Nikole is a mom with a background in education and incredible insight to the realities many chronically ill patients face. Diagnosed with Mixed Connective Tissue…
I’ve been using internet dating sites for the past eleven years. I have also been dealing with a rare and undiagnosed disease for the past five and a half years.…
Ever have one of those days when you just weren’t feeling very enthused about your life? You know what I’m talking about. Those ho-hum blues. Those days when you don’t…
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…
Have you ever felt lost in your own body? Have you ever temporarily lost your hearing due to massive ringing in your ears? Have you ever had the world go…
10 Things I have learned from living with Ehlers-Danlos Syndrome 1. It is not that bad to be spontaneous When I was younger I had plans and lists for…
Oh Canada, people think you’re all “please and thank you,” and maple syrup, but I know the truth: You’re a fighter and that fight is most obvious in the Canadian…
Only THREE more days for families, patient advocacy groups, and researchers to give input into NIH’s new initiative on undiagnosed disease research. Do you have ideas about strategy, metrics, approaches…
When Skyelah was born her mother Angela immediately noticed something was different. She had three other children who had all cooed and smiled as infants. Skyelah rarely did, in fact,…
When browsing through Tumblr or scrolling past tweets have you ever found yourself asking, "What is a spoonie?" It's time to find out. First of all, a spoonie is a…
Dominick “Dom-the-Bomb” Lukowski has always loved baseball. But during his freshman year in high school, he was shocked to notice that he barely had the strength to throw a ball…
Familial Cold Auto-Inflammatory Syndrome is a very rare condition; set apart even from other hereditary periodic fevers. These unique traits are something that patients with FCAS are all too familiar…
CAPS FCAS, MWS, and NOMID all fall under CAPS with mutations in the same gene and share some overlapping symptoms. However, each has unique distinctions and there can also can…
Patients with CAPS are one in a million, but that rarity and its presence at birth (even infants with CAPS can be symptomatic), make it important for children with the disease…
People are not pandas. So as a general rule, seeing bamboo is not going to make us happy—a fact that is most emphatically true for people with ankylosing spondylitis (AS).…
Did you know that there are over 7,000 rare diseases, and 1 in 10 Americans has one? When you're part of a small patient population, it's hard to get noticed.…
If rare diseases were participating in a beauty pageant—where “beauty” means “little known,” “poorly understood,” and “damn near impossible to diagnose”—Ehlers-Danlos Syndrome (EDS) would be right up there among the…
Colossal pain. Mammoth swelling. Hypersensitivity. Drastic changes in body temperature. Imagine being in that kind of pain all the time. Frankly, it sounds a little like a nightmare. Well,…
Have you read the first part of Kathryn's interview? Check out This Honest Mom Doesn't Want You to be Ashamed of Your Rare Disease. “Moving to the west coast has…
I may look "fine" to you on the outside but what I'm experiencing on the inside is not "fine". I have a couple of different forms of an incurable invisible…
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