Archive for the ‘Managing Symptoms’ Category
Posted on December 14, 2014
Your input is needed for this very important EDS survey! Follow the link at the bottom of this article to take the survey. This survey on gastrointestinal issues is being conducted by a group of doctors at Beth Israel Deaconess Medical Center / Harvard Medical School. The goal is to better understand the bowel and stomach issues that might […]
Posted on December 13, 2014
Nicola’s story brings awareness to how difficult life can be with hypermobile joints. She is fortunate to have a the help of a supportive fiance and a mother who is a retired nurse. By PETER HENN. Nicola Lynch, of Rainham, Kent, has dislocated her shoulders 80 times and her thumbs 25 times each in the six years since […]
Posted on December 8, 2014
EDS Awareness invites you to watch this FREE webinar recording!
Dr. Subinoy Das presents: “Sinus Care for Ehlers-Danlos Syndrome”
Dr. Das is an Otolaryngologist (ENT specialist) and
CEO of the U.S. Institute for Advanced Sinus Care and Research.
Posted on December 6, 2014
Ruth Baker is telling her story to increase EDS Awareness in the UK. She shares our passion – helping even one person makes it all worthwhile. Ruth says, “It can be a lonely place when you’re suffering from something that is so rare that even doctors don’t know what you’re talking about.” Doctors need to understand that EDS is perceived as a rare disorder only because […]
Posted on November 28, 2014
Five-year-old Annabelle Griffin inspired local firefighters to perform physical feats — raising money and Ehlers Danlos Syndrome awareness in the UK. Annabelle has VEDS. FIREFIGHTERS pushed themselves to the limit scaling the UK’s three highest peaks and cycling 500 miles to raise a staggering £15,000 for charity. The group of eight men from Oldham Fire Station […]
Posted on November 26, 2014
Christine has found a method to cope with her Ehlers Danlos Syndrome that works well for her. Practicing gentle yoga has changed the way she thinks and feels about her pain and helps her get back more control over her life. By Locke Hughes. “Many of us have dealt with a painful injury or illness at some point […]
Posted on October 28, 2014
In this VIDEO, Dr. Jeff Milunsky describes how a new DNA chip test, CONNECT1, detects multiple mutations that are diagnostic for connective tissue disorders such as Marfan, Ehlers-Danlos, and Loeys-Dietz syndromes. Dr. Jeff Milunsky is the Co-director of the Center for Human Genetics, Inc. This presentation was given in August 2014 to the Massachusetts Chapter […]
Posted on October 24, 2014
Dr. Peter Rowe discusses 3 areas of dysfunction often found in Chronic Fatigue Syndrome patients —circulatory disturbances, joint hypermobility, and movement restrictions. These appear to have some commonality with Ehlers-Danlos Syndrome. Fortunately, recent research is beginning to change the previous misperception that there are “no abnormal physical findings with CFS” and refute that it has a “psychosomatic origin”. “In […]
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