The story of my disease journey will be very familiar to many patients around the world. I was born and raised in a third world country where quality medical care…
Patients living with any of the Ehlers-Danlos syndromes (EDS) might be tempted to one day visit a chiropractor. The implications of the condition might also make make them equally hesitant…
Rebecca Wanosik was already a pro when it came to being a mom. Zedyn was her fifth child. She knew to trust her gut when, three weeks after her baby…
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…
How would you respond if your body did not work for you but against you? What if you felt that your body was actually your enemy? For people with Ehlers-Danlos…
I have to admit that I had tunnel vision when it comes to patient advocacy. I naively thought that everyone was direct and honest with their doctors. I believed that…
Happy Friday Patient Worthians! PW Contributor Nolan is back in our Video Series with his details on dystonia treatment. We also have some cool info on EDS gadgets! What do pharmaceutical companies mean…
So who doesn't love Doctor Who? It seems like no one in the world wants to keep that doctor away, but only a select few enter the ranks of "Doctor Who superfan." Of…
Sixteen-year-old Sydney Rohmann has a number of rare conditions that have left her in a wheelchair. Among them are Ehlers-Danlos syndrome (EDS) and postural orthostatic tachycardia syndrome (POTS). She has even had brain…
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…
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…
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,…
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…
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