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…
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…
Ignorance - Lack of knowledge, learning, information. Careless - Having no concern or care, not paying attention. When trying to find the perfect words to describe the youngest Jenner's latest…
Unless you live in a box (or don't frequent Amazon.com), it's Christmahanawkanzika time! The most wonderful time of the year! To continue the trend of the winter festivities, we wanted…
The family has left town. The leftovers are dwindling. And yes, carols have once again dominated the airways. All that means is.... Thanksgiving was awesome, but it's Christmahanakwanzika time! But…
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…
During the Holiday Season, we take time every year to express what we are thankful for. Usually this includes, friends, family, food on our tables, and a roof over our…
Dear strong one, I look at you and I see determination. Things are so hard for you right now, rushing from hospital to hospital. I know that you never imagined…
We all have that one relative, who every time they see you, always asks, “So, when are you having kids?” or the mom who is desperate to be a grandmother.…
Meme Monday has been taken over by some of the most treacherous monsters of Halloween and Hollywood lore. All week we are profiling each monster that has tied us all…
To SubQ, or not to SubQ? That is a question many people living with chronic illnesses face at some point in their lives. For some, subcutaneous injection (SubQ) is the…
In recognition of Back to the Future day, the exact date that Marty Mcfly traveled to in 1985, The Micheal J. Fox Foundation and the White House are encouraging speculation…
If you have a friend or family member who recently was diagnosed with Behcet’s Disease, it’s time to educate yourself about the disease—because the more you know—you’ll be better prepared to…
One of the frustrating parts about having Behcet's disease is that it can affect so many different parts of your body. And unlike other conditions that may only need a…
Don't you just hate click bait? I do! While searching for real information about Behcet's Disease--because, WE NEED IT!--I came across this; an article about Behcet's treatment by Business Standard.…
When you’ve got a rare disease, people are bound to give you The Look. You know the one. It says: “Oh, bless your heart; you’ve lost so much.” And you…
My name is Lisa. I am a 3x cancer survivor thriver, and I am living with the rare autoimmune disease Myasthenia Gravis. I am a mother, a wife and an…
Just like breaking up with your significant other can be hard to do, so can breaking up with your doctor. After all, he or she may have been with you…
Patient Worthy is bringing another conference to you through live tweets (@PatientWorthy)! Yesterday and today our director of advocacy is attending the Orphan Drug Summit in Copenhagen , Denmark. Among…
His Dad played alto Sax, but Neal played drums. And when I say played drums, I mean like nothing you've ever seen before! Those around him were in awe. As…
Denim is a lot of things—it’s versatile, it’s comfortable, and with the right cut, it’s great for your butt. But is denim really life-changing? Thanks to Jeans for Genes Day,…
As we join in the #DystoniaAwareness movement to make September the official month to support the Dystonia community, we will be posting blog posts from the Dystonia Muse herself, Pamela…
Kimberly was diagnosed with chronic, late stage Lyme disease just this June, after suffering for over a decade. By the time it was finally discovered she had three co-infections and…
Did you know September is Dystonia Awareness month! It's in the process of becoming nationally recognized, all it needs is your signature! Sign the petition, visit Dystoniaaware.org, or watch their video…
We last left Allen's story where this brave soldier had to leave the service due to the immense pain caused by a mystery condition. To get caught up on…
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