Honestly, this is a crazy story-- heartbreaking, too. A young woman was told she had lupus, and spent the next seven grueling years enduring treatment, including chemotherapy and steroids, for a…
Happy Memorial Day Weekend Patient Worthians! Memorial Day is the perfect opportunity to hang out with friends and family, and appreciate the times where life seems somewhat "normal". But before…
Global Genes tells us that Bonnie Wheeler spent the first 40 years of her life enduring the symptoms of undiagnosed Ehlers-Danlos syndrome, which is a grouping of connective tissue disorders.…
Dear Ehlers-Danlos Syndrome, I have been living with you my whole life, but you started to show your ugly face 5 years ago. And during all that time I couldn’t…
Editor's note: Ehlers-Danlos syndrome research is constantly evolving. Since the publication of this article, we have covered more types that were not included in this article. To check out a…
10 cosas que he aprendido viviendo con el síndrome de Ehlers-Danlos 1. No es tan malo ser espontáneo Cuando era más joven yo tenía planes y listas para toda mi…
Here’s a heartbreaking story out of the UK that reminds us never to take anything in life for granted. A young mother with two children, Saffron Taylor, was recently diagnosed with…
Pastel de calabaza, galletas de jengibre, pan, bastones de caramelo, y chocolates. ¡Oh, qué dulce estación! Hace mis hijos unas cuantas noches y yo pasamos un par de horas agazapados…
Did you guys know Rare Disease Week is next week? Come participate with us! This week however, we wanted to address some rare diseases of our own: Lyme and POTS. Though POTS…
"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…
Happy almost-Valentine's Day Patient Worthians! What are your plans for this weekend? It's a special holiday-- Valentine's Day, designed for romance! But let's face it, chronic disease isn't always sexy, so maybe…
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…
Natasha Lipman, a chronic illness blogger, was watching TV one morning, when something rankled her ire. The ITV show, This Morning, was doing a segment on whether or not children…
Merry Christmas Patient Worthians! And no worries if you don't celebrate it, because we're celebrating the overall spirit of giving by supporting this crowdfunding initiative with CysticLife. This month, we have been teaming…
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…
"As far back as I can remember, i was told pain was normal, or in my head, and to keep going" Welcome to the life of Dawn Michelle Shepley...and,…
Happy Friday PatientWorthians! We are so excited to announce our partnership with CysticLife this month. PatientWorthy is teaming up with CysticLife.org to spread awareness of CF and support their collaboration with the Mayo…
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…
10 Dinge, die mich das Leben mit dem Ehlers-Danlos Syndrom gelehrt hat 1. Spontan sein ist gar nicht schlecht Als ich jünger war hatte ich Listen und Pläne für…
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…
If you or someone you know has Ehlers-Danlos syndrome (EDS), you probably know a great deal about it, making you part of a very small population. Not many people have an understanding…
With rare diseases, there’s often a lot of information that’s unknown or mysterious to the general public, patients, and even doctors. Ehlers-Danlos Syndrome (EDS) is a group of disorders that…
If you live in Connecticut, and happen to have a rare disease, efforts are being made to help make your voice heard. When you're one in a very few, it…
Double D's. And not the good kind. Disease and Depression. All too often, after being diagnosed with a chronic illness, patients just give up. They withdraw. They stop trying. They…
"I wish people would just take five minutes to look up Ehlers-Danlos syndrome to raise awareness." These are the words of 15-year-old Mya Lilly Hurst, an Australian girl who suffers from…
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