Si usted vive en Connecticut, y sucede que tiene una enfermedad rara, se están haciendo esfuerzos para ayudar a que su voz sea escuchada. Cuando usted es uno de muy…
La enfermedad y la depresión. Con demasiada frecuencia, después de haber sido diagnosticado con una enfermedad crónica, los pacientes se dan por vencidos. Se retiran. Ellos dejan de intentarlo. Ellos…
"Me gustaría que la gente simplemente tomar cinco minutos para buscar el síndrome de Ehlers-Danlos para crear conciencia." Estas son las palabras de 15 años de edad, Mya Lilly Hurst,…
If you have Ehlers-Danlos Syndrome (EDS), life can get a bit complicated. Between doctors not knowing what you have to trying to figure out what treatments to use, it can…
Happy Thanksgiving Patient Worthians! We hope you are recovering from big meals and continuing to spend time with family this weekend. Editor's choice this week focuses on gratitude expressed by our…
Recently I was asked to write a piece about what I am thankful for this Thanksgiving. My first reaction was, "Oh God, Thanksgiving is actually here again?" I don't have…
Si las enfermedades raras estaban participando en un concurso de belleza, donde la "belleza" significa "poco conocido", "mal entendido", y "casi imposible de diagnosticar" -Ehlers-Danlos (EDS) sería a la altura…
I’ve gotta hand it to this German gal named Karina, who posted an article about her journey living with Ehlers-Danlos syndrome (EDS), a chronic illness that affects connective tissues in areas…
Happy Halloween Weekend Patient Worthians! PW Contributor Tom has two of the most popular posts this week! In one, he gives us a surprising outlook on dystonia. Additionally, he talks about…
How many people don't like going to the dentist? A lot. And how many people with Ehlers-Danlos Syndrome (EDS) hate going to the dentist? Most of them. Or at least…
I read an interesting article posted on Living the Diagnosis by Vicky Warren. I’ve got to applaud her for sheading more light on Ehlers-Danlos syndrome (EDS), a genetic rare disease/syndrome.…
If you were at a cocktail party and someone happened to mention they have Ehlers-Danlos syndrome, how would you respond? Would you deftly swirl the wine in your glass, pretend there's…
When you get a diagnosis of a rare disease, like Ehler-Danlos Syndrome (EDS), trying to learn about it can be overwhelming. Where do you even start? Do you just start…
Sometimes a video speaks VOLUMES more than mere words. Maybe that’s why Kaleigh McCormick decided to make a video about her life with Ehlers-Danlos syndrome (EDS). Maybe she made the…
There’s nothing quite like somebody who “gets it,” when you’re feeling low because you have Ehlers-Danlos Syndrome (EDS). Thankfully, there are organizations out there created by—and dedicated to—being there for…
How much do I love that there’s a Pinterest page called 1000+ Ideas About Ehlers-Danlos Syndrome Products?!? Way to go, EDS community for sharing info, ideas, and support! I found…
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,…
When Angela Clarke was just hitting the teenage years, she craved the attention wearing high heels would bring her--plus, being short in stature, she saw them as a quick fix to…
I grew up working in my dad’s retail store and he used to have a saying about customer foot-traffic: They come in bunches, like bananas. Am I the only one…
Having a rare illness often makes people feel isolated and alone. When you feel as if no one understands where you’re coming from—or worse yet, when friends and family act…
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.…
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…
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…
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