Posted by Debbie Vaughan on June 27, 2010 · 7 Comments
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
Filed under Awareness, Ehlers-danlos syndrome, Life's Lessons · Tagged with chase giving, EDS, EDS IV, EDS Research, eds today, Ehlers-danlos syndrome, Rare Diseases, Research, Support & Friendship, Vascular Ehlers-Danlos syndrome, VEDS
Posted by Debbie Vaughan on April 28, 2010 · 1 Comment
In early 2010, I created an online survey for patients (or their family members) to complete. The idea was to gather some basic information on ourselves as a community because the better informed we are, the more capable we are to advocate for ourselves and our loved ones. So far, more than 220 surveys have … Read more
Filed under Awareness, Ehlers-danlos syndrome, Research Information, Symptoms of Ehlers-Danlos syndrome · Tagged with EDS, EDS Network C.A.R.E.S., Ehlers-danlos syndrome, HEDS, KEDS, Research, Support & Friendship, VEDS
Posted by Debbie Vaughan on March 29, 2010 · 1 Comment
Named for actor John Ritter, who died from an aortic dissection, the Ritter Rules offer practical guidelines for patients to equip themselves with and increase their chances of accurate diagnosis and treatment. There are many diseases and risk factors at work, just one of which is Vascular Ehlers-Danlos Syndrome, but other genetic syndromes and lifestyle … Read more
Filed under Awareness, Ehlers-danlos syndrome, Related Disorders, Symptoms of Ehlers-Danlos syndrome, Treatment · Tagged with EDS, Ehlers-danlos syndrome, John Ritter, Loeys-Dietz Syndrome, Marfan Syndrome, Rare Diseases, Research, VEDS
Posted by Debbie Vaughan on January 30, 2010 · 1 Comment
Surely everyone deals with piles of paper in various corners of their home; or, at least I like to think I’m not the only one. It occurred to me this morning while searching for my glasses (my cat is fond of knocking them off my nightstand) and I paused to straighten a pile of papers … Read more
Posted by Debbie Vaughan on January 26, 2010 · 2 Comments
It’s strange what being the parent of a child with a rare, life-threatening or debilitating genetic disorder can do to a person. There’s even a movie out right now about it – “Extraordinary Measures”, with Harrison Ford and that other guy from the “George of the Jungle” movie my kids still like to watch. You’ve probably … Read more
