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Double-jointed? Often in Pain? It Could be Ehlers-Danlos Syndrome!
Ehlers-Danlos Syndrome (EDS) was once thought to be a rare disorder, but EDS experts say its prevalence is under-estimated and its diagnosis is often missed! Learn the signs. By Abi Jackson _ If you suffer from these ailments, you could have EDS – a rare condition of the joints. Here’s what you need to know. If you don’t know […]
EDS & Chiari “Unite@Night” Walks in Ohio
The May 30th Ehlers-Danlos / Chiari walk in Cincinnati, OH had an over whelming response! In addition to our group members, the walk attracted more than 75 new EDSers and families! Please join us in June for several walks throughout the country!
EDS – Chiari Walk & Run in Milford, CT
EDS – Chiari Walks are being planned for EDS Awareness. Here is a well-organized walk that received newspaper coverage in Milford, CT. Jackie Stager is a smart, talented, and spirited young teenager with plenty of dreams, hopes, and aspirations just like any other 14-year-old.
McCullough Students Sing to Help Girl with Ehlers-Danlos Syndrome
These very talented students are providing awareness for a child with Ehlers-Danlos Syndrome. McCullough Junior High School choir students raised thousands of dollars during their third annual pop concert benefiting a Woodlands-area family in need.
Henry Has Classical Ehlers-Danlos Syndrome
Little Henry and his family are struggling with Classical Ehlers-Danlos Syndrome. It took a year to be diagnosed. Now that the cause of his symptoms has been identified, his parents can better care for him.
New Program for Vascular Ehlers-Danlos Syndrome
Vascular Ehlers-Danlos Syndrome is the most devastating type of EDS. It’s a disease so rare that only one out of every 250,000 people will be diagnosed with it. The DEFY Foundation was started by two students at West Chester University.
When Food Allergies Are Actually Mast Cell Activation Syndrome
Brynn had a long history of adverse reactions to many foods she was eating, but finally determined it was not traditional food allergies! She has found ways to manage her Mast Cell Activation Syndrome – including EpiPens and a service dog. By Kira Peikoff The Symptoms Brynn Duncan was 11 years old when her stomach started to revolt against food. Frequently […]
The Smiths have Worked Year-Round to Spread the Word about Ehlers-Danlos Syndrome
Ellen and Stuart Smith have been very active in the Rhode Island EDS Awareness and Support Group. They are educating and supporting those with this condition and their caregivers. By MELANIE THIBEAULT, Valley Breeze Staff Writer. SCITUATE – Most of 65-year-old Ellen Lenox Smith’s day is spent managing a painful connective tissue disorder called Ehlers-Danlos syndrome, […]
