Welcome to December 2015 PatientWorthians! 'Tis the season for sharing and do we have some stories for you! As we round #NERVEmber this week, we want to highlight some hope for our…
Happy Day-After-Thanksgiving PatientWorthians! Around this time of year, we like to emphasize the amazing gratitude in the chronic disease world. Living with a chronic illness is often a serious bummer, to…
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…
For Part 1 of Laurie's Life with Dysautonomia, click here. For anyone who is still doubting Dysautonomia and POTS, I've come up with what I call the Dysautonomia Party Trick Challenge.…
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…
Hey, how’d you like to be able to wear shorts anytime you want, even in the dead of winter? Sounds good, right? How about being able to eat as much…
I love desserts. Its “stressed” spelled backwards. There is just something relieving about being able to sink your teeth into something sweet. But when diagnosed with a chronic illness, often…
Chronic illness will forever affect a patient’s outlook on life. Sometimes, the outlook depends on how the patient physically feels in that moment. After my previously dependable health went downhill…
Because it's the month of #NERVEmber, we are highlighting CRPS and other nerve pain conditions. Diseases like CRPS and POTS often go unnoticed in the community at large. We are honored to bring awareness…
Kathryn is a wife and mother of two amazing kids. She lives with undifferentiated idiopathic periodic fever syndrome, cold induced urticaria, and POTS. Patient Worthy got the privilege of hearing,…
Cuando eres es un padre preocupado con un hijo enfermo y los médicos no pueden decirle lo que está mal, o darle respuestas que no conducen a soluciones, ¿qué se…
Dysautonomia (dis-aw-tuh-noh-mee-uh or dis-auto-noh-meeuh) is surprisingly common. Around the world, an estimated 70 million people are impacted by autonomic nervous system disorders. And while some forms are fairly rare, there are…
We are mid-#NERVEmber and gearing up for the Thanksgiving season! As we continue covering chronic illnesses like CRPS/RDS that can greatly effect the nerves, we are also highlighting some helpful tips and stats to…
Meet Emily Deaton, 21, of Mechanicsville, Virginia. Like many people with invisible illnesses, Emily's journey to an accurate diagnosis was more of a nightmare than a dream. Emily has a disease of…
Being diagnosed with a chronic neurological illness can be vindication after years of countless specialist visits, tests and research. Yet, there is a still a type of bereavement period that…
Hanna Gully was a girl with a dream: one day she was going to travel the world, and dare to do all of the things she had set her mind…
We are kicking off #NERVEmber! We are very excited to be a part of this campaign to shed some light on chronic illnesses like CRPS/RDS that can greatly effect the…
In 2013 Nisa woke on the floor needing stitches in her head. She had no memory of falling. Looking back that was the beginning of her journey with POTS, which…
It's flipping Halloween week! While some of these stories will give you the good feels, we have one for you that will give you the heebie jeebies. Check out these…
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…
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