Posted by Debbie Vaughan on July 1, 2010 · 3 Comments
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
Filed under Awareness, Ehlers-danlos syndrome, Related Disorders, Research Information, Treatment · Tagged with aneurysm, arterial complication, arterial rupture, EDS Research, EDS Type IV, Ehlers-danlos syndrome, Marfan Syndrome, Vascular Ehlers-Danlos syndrome, VEDS
Posted by Debbie Vaughan on May 10, 2010 · 14 Comments
Standing shoulder to shoulder with hundreds of other parents this past Monday on what turned out to be an absolutely sticky afternoon, I waited with my son as the crowd behind us pressed in. Sixth grade students from all over our county had descended on a parking lot to embark on the week they’d been … Read more
Filed under Awareness, Ehlers-danlos syndrome, Life's Lessons, Uncategorized · Tagged with children with rare disease, childrens rare disease network, connective tissue disorder, EDS, EDS IV, EDS Type IV, Ehlers-danlos syndrome, genetic disease, parenting, Rare Diseases, Support & Friendship, Vascular Ehlers-Danlos syndrome, VEDS
Posted by Debbie Vaughan on May 7, 2010 · 9 Comments
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
Filed under Awareness, Ehlers-danlos syndrome, Research Information, Symptoms of Ehlers-Danlos syndrome · Tagged with aneurysm, arterial complication, arterial rupture, arthritis, atrophic scarring, Beighton Scale, bowel perforation, clubfoot, easy bruising, EDS Awareness Month, EDS IV, EDS Research, EDS Statistics, EDS Survey, EDS Type IV, Ehlers-Danlos Network CARES, flat footed, hip dysplasia, Inguinal hernias, large eyes, nosebleeds, premature rupture of membranes, scoliosis, sleep with eyes opened, splenic rupture, stretchy skin, uterine rupture, Vascular EDS, Vascular Ehlers-Danlos syndrome, VEDS, visible veins
