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…
Our lives were forever changed on March 29th, 2004 – the day my son Tailen was born. There isn’t a day that goes by that I don’t wish that we…
Happy Easter Weekend Patient Worthians! And if you don't celebrate it, Passover is only a month away. If you don't celebrate either one, then why not celebrate life?! This week we…
Nolan is a rare dad not only living with, but running with dystonia. Patient Worthy has had the privilege of meeting him, working with him in a recent photo shoot,…
April 15th marks the deadline for the FDA to approve or deny approval for Mycapssa, a drug created by biotech company Chiasma. Mycapssa is pending approval for the treatment of…
As you know from my previous posts, I am an anti-inflammatory nut. But as of late, I have gotten a sweet tooth- ya introduce sugar once, and it's all down…
In this election year, a good way to practice being politically active is to write a letter supporting a bill with the catchy name Orphan Product Extensions Now, Accelerating Cures and…
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