Archive for the ‘Managing Symptoms’ Category
Posted on November 1, 2013
Discovery Health Channel presents an episode about Ehlers-Danlos Syndrome. This TV segment portrays Alberto Friedman’s family of EDSers and describes the challenges they face. It addresses EDS Hypermobility and Vascular types.
Posted on October 18, 2013
What an exciting opportunity to promote EDS Awareness with this marathon in Columbus, Ohio! Click here to see Heather at Mile 24 The Nationwide Children’s Hospital Columbus Marathon & ½ Marathon is pleased to announce its field of “Patient Champions” who will represent 24 of the 26.2 miles on this year’s course. Two of the […]
Posted on October 17, 2013
Heather represents EDS patients at the Nationwide Children’s Hospital Marathon in Columbus, Ohio on October 20, 2013. Our Columbus EDS Support Group will join Heather to promote EDS Awareness to the public! Each mile marker features a Children’s Champion, each with a different health condition. She will be at mile marker 24. Here is her story: […]
Posted on October 13, 2013
Erika helped to coordinate a medical conference on Ehlers-Danlos Syndrome connecting EDS experts with Canadian neurosurgeons, geneticists and pediatricians. On Oct. 12th, experts including Dr. Fraser Henderson spoke to the group. Erika also shared her experiences. By Susan Gamble, Brantford Expositor When Erika Crawford desperately needed a complex operation that was perfected in the U.S. and not covered by OHIP, […]
Posted on October 11, 2013
Three weeks ago Theresa was finally diagnosed with Ehlers-Danlos Syndrome, a connective tissue disorder that affects her joints. She finally found a name for the pain! HANOVER — Several months ago, Theresa Selfe decided to take a walk, not realizing how much she would regret it. She sat down for a while after returning home and when […]
Posted on September 29, 2013
Some staff members of Saundersfoot Community School are running, swimming and cycling to raise money for an orthopaedic bed for Beth who has Ehlers-Danlos Syndrome “October will be a busier than usual month for some staff members of Saundersfoot Community School. Inspired by the recent Ironman event, a number of ladies at the school will be […]
Posted on September 19, 2013
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. […]
Posted on September 18, 2013
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, […]