Research at Johns’ Hopkins Offers Hope for EDS
Update – 2/4/2011: The information contained in this article is published with the permission of EDS Network C.A.R.E.S., for whom this letter was originally written by Dr. Dietz. It’s through the relentless pursuit and dedication of this group that this project is happening at all. They are a fabulous group of patients, families, and friends … Read more
The Council of Mothers (and a few devoted dads)
The Council of Mothers (and a few devoted dads) convenes as necessary in the wee hours of the morning, the midday afternoon on holidays, the Tuesdays after checkups and at all other times deemed necessary by its members. Together we share one another’s questions, worries, and our greatest common fear – the loss of our … Read more
Survey Results: Vascular Type
What Vascular EDS Patients are Saying: The symtoms and percentages listed below are from the informal online survey I’ve had posted for a few weeks now. These results are only for the patients who identified themselves or their loved ones as having the Vascular type of Ehlers-Danlos Syndrome. Also, these results are changing every day … Read more
