Joint Hypermobility
Actress Gemma Christie is Back After Struggles with Ehlers Danlos
Gemma Christie is a popular UK singer/actress with 4 disorders, including Ehlers Danlos Syndrome. She is returning to the stage with the goal of bringing public awareness to invisible illnesses, such as EDS. This live performance called “Gemma Climbs Her Mountain” is about hope and rising above the illness. The play focuses on Myalgic Encephalopathy (ME), a disorder that is similar to Chronic Fatigue Syndrome. […]
Educational Advocacy and Accommodations for Ehlers Danlos Students
Students with medical conditions, such as Ehlers-Danlos Syndrome (EDS), should have equal educational opportunities in all countries. Unfortunately, that isn’t the reality – according to Amy King, an EDS student and advocate for adult education in the UK. Many adults living with Ehlers Danlos Syndrome (EDS) are highly intelligent, motivated and hard-working individuals looking for the opportunity to learn and contribute to their […]
8 Year Old Forest Ranger with Ehlers Danlos Syndrome on TV
Watch this video about a boy with Ehlers Danlos Syndrome whose dream came true! “Eight-year-old Gabriel was officially named an honorary ranger at Yosemite National Park. Gabriel Lavan-Ying, from Gainesville, Florida, has Ehlers-Danlos syndrome, a debilitating and incurable disorder affecting that causes overly flexible joints and effects the skin and blood vessels. But when the Make-A-Wish Foundation […]
Nicola Gets Help From Fiance for Her Hypermobility Syndrome
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 […]
UK Woman Spreads Awareness of Ehlers-Danlos Syndrome
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 […]
How Yoga Helps Christine Cope with Ehlers-Danlos Pain
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 […]
A Diagnostic Test for Marfan Syndrome and Other Connective Tissue Disorders
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 […]
Dr. Peter Rowe – “Is The Physical Examination Normal in Chronic Fatigue Syndrome?”
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 […]
