Joint Hypermobility
Chronically in Pain and in Love – POTS and Ehlers-Danlos Syndrome
The diagnosis was bittersweet. It was good to finally have an answer …. Ehlers-Danlos Syndrome! By Emily McComas CHARLESTON, W.Va. — Kyli Wolfson was losing hope. “For most of her life, she had struggled with a lack of energy. She couldn’t keep up with her peers in middle school gym class and tried to work with […]
CrowdMed.com Website Helps Solve “Medical Mysteries”
CrowdMed.com helps patients collaborate with others as they explore rare medical conditions, such as Ehlers-Danlos Syndrome. Many have received suggestions that they can research and take to their doctor. Always consult your doctor first. BY: Kate Merrill NEWBURYPORT (CBS) – “Only a few years ago dancing, art, and music came easy to Diana Cleaveland. Now the 51-year-old […]
Hypermobile UK Mum will Give the Singing Performance of a Her Lifetime
Chloe is following her dreams by giving a public performance debuting their first album Songbird. By Rene Gerryts A CHRONICALLY ill mum is to defy the odds by performing her debut album live. Chloe Evans-Lippett suffers from hypermobility syndrome that’s left her wheelchair dependent, in constant pain with hips that dislocate up to 11 times a […]
Jeff with EDS – “I Just Need to Give my Crazy Movie a Good Ending.”
By ED KEMMICK/Billings Gazette Jeff Hanson has EDS and while struggling with it he is determined to stay strong and make the best of this situation. “Jeff Hansen has Ehlers-Danlos syndrome, a rare connective tissue disorder with symptoms that include extreme flexibility. In mid-November, Jeff Hansen knew he’d reached an important milestone. He […]
Katie – “When I reached 16 I Had Dislocated My Hips about 50 Times from EDS”
Katie Vale has finally discovered some methods to help her manage her Ehlers-Danlos Syndrome symptoms. By: Lucy Benyon Published: Sun, December 15, 2013 “Katie Vale was diagnosed with Ehlers- Danlos disease which causes regular injuries [PH] Katie, 34, lives in Essex in the UK. Eleven years ago she was diagnosed with Ehlers-Danlos syndrome, a condition that causes her […]
EDS Awareness Speaker Series – The Evolution of Genetic Diagnosis – Recording Available
EDS Awareness invites you to watch this FREE webinar recording! Our presenter for November 20th was Stephanie Gandomi, MS, CGC, LGC She is a Licensed Genetic Counselor Her topic was: “The Evolution of Genetic Diagnosis and Why This Matters In Patient Care!” The recording of this presentation is now available at the following link: Click here to […]
Dr. Francomano Video: Ehlers-Danlos’ Affect on Multiple Body Systems
Don’t miss these videos! Dr. Francomano, EDS expert, talks about Ehlers-Danlos as a multi-dimensional disorder that can profoundly affect quality-of-life. She describes how EDS affects multiple body systems–musculoskeletal, neurological, dermatological, cardiovascular, gastrointestinal, and immunological. She discusses pain, fatigue, autonomic dysfunction, and much more. Chiari, Fibromuscular Dysplasia, CVID, and Mast Cell Activation Disorder are also mentioned. […]
EDS Awareness Speaker Series – Alberto Friedmann – Recording
We had a special event for our EDS Speaker Series session on November 4, 2013. Our EDS Partners at Arming Champions (Allen and Carolyn Fisher) conducted an interview with Alberto Friedmanncall for them who is a Martial Arts Master with Ehlers-Danlos Syndrome. He also teaches martial arts and self-defense to children and adults with special needs. You can listen […]
