Articles
Innovative Blood Test for Vascular Ehlers-Danlos Syndrome
Researchers are making some progress discovering a potential biomarker for aortic dissections related to Vascular Ehlers-Danlos Syndrome. Posted by: Anna Ishibashi “Researchers from ShrinersHospital for Children, OregonHealth & ScienceUniversity, Baylor College of Medicine and the Texas Heart Institute, have demonstrated for the first time that fibrillin-1 in the blood stream could be a biomarker to diagnose aortic aneurysms and aortic dissections. […]
Doctor Speaker Series
EDSawareness.com is excited to be offering this Doctor Speaker Series to our EDS Membership. We are limited in the number of openings so please dial in early (by telephone only) to attend the program. The sessions will be the 1st and 3rd Wednesdays at 9:00 pm EST. Our speaker for September 18 was Dr. Stephane Treyvaud. Dr. Treyvaud is an adult, […]
Doctor Speaker Series: Dr. Stephane Treyvaud
We were pleased to have Dr. Stéphane Treyvaud present in our EDS Doctor Speaker Series. His presentation aired on September 18, 2013 at 9:00 pm EST. Dr. Treyvaud is an adult, and child and adolescent psychiatrist. He is a fellow of the Royal College of Physicians and Surgeons of Canada, of the equivalent college […]
Bruising Can Be a Manifestation of Ehlers-Danlos Syndrome
Ehlers-Danlos Syndrome patients may be sensitive to bruising due to fragile capillaries and blood vessels surrounding the connective tissues. This story tells more about this symptom. by Pavitra Sampath “Mysterious bruises have been appearing on my legs for a while now, mostly on my thighs, but also on my calves. Sometimes they appear and I can […]
National Champion Figure Skater John Coughlin is an Ehlers Danlos Syndrome Supporter
John’s mother struggled with pain and was finally diagnosed with Ehlers-Danlos Syndrome. The Ehlers-Danlos National Foundation (EDNF) is pleased to announce that U.S. pairs figure skater John Coughlin has become a public supporter of the organization. Coughlin lost his mother to Ehlers-Danlos Syndrome (EDS) in 2010, and he is committed to raising awareness and increasing support for […]
EDS Support Group in Lancaster
This EDS Support Group is promoting EDS Awareness in Lancaster. By EMILY PEIFFER Staff Writer epeiffer@lnpnews.com “You may notice something different when you pay for your morning coffee at Turkey Hill. Donation jars for Ehlers-Danlos Syndrome, a rare genetic disorder, are now at the checkout counters of four local Turkey Hill markets. The driving force behind […]
Attention Doctors: An EDS Patient’s Bill of Rights
Many EDS patients are struggling to get their doctors to understand their condition. This “Bill of Rights” is a tool that may help EDSers communicate with doctors. By an_angel_with_wings “The purpose of this Bill of Rights is not to be combative or argumentative. I have experienced all of these things during the time that my […]
12 Ways to Help a Nauseous or Unhappy EDS Stomach
by Yvette Thomas If you have Gastrointestinal problems that frequently accompany EDS, here are some helpful suggestions from an EDS Support Group member. (Always consult your doctor first.) 1. Small meals always. Try not to go a long time in between eating. Always carry a little snack with you. Something protein-based like string cheese or nuts. […]
