Community
Skydivers Fundraise for Toddler with Ehlers Danlos Syndrome
On July 5th, supporters of this 3-year-old EDSer jumped at the chance to raise money for his medical equipment. Eleven people, including his mother, actually jumped from a plane! Skydivers are raising money for a toddler with two serious medical conditions. Fundraisers from Burnham and South Woodham are preparing to jump from a plane on Saturday […]
Music Therapy Helps 11-year-old Battle Ehlers-Danlos and Chiari Malformation
The OPUS hospital music program helps James cope with Ehlers-Danlos pain. In addition, a recent study showed 29% lower anxiety levels and a lower average breathing rate in patients who were played music during their operations. Click here to watch videos demonstrating how the OPUS music therapy program is helping patients. By Dan Russell, Nottingham Post. “MUSIC is helping an 11-year-old boy […]
180 Guests Enjoy Ball with Annabelle Griffin & Ehlers Danlos Support UK
Annabelle’s charity continues to garner support and raise awareness of Ehlers-Danlos Syndrome (EDS). By Saiqa Chaudhari. “A GLITTERING ball saw 180 guests raise more than £3,000 for a charity which aims to “make the invisible visible”. Brandlesholme charity Annabelle’s Challenge hosted the glamorous event at The Village Hotel in Bury in aid of national organisation EDS UK. The […]
“Doctor Speaker Series”: Cardiac manifestations in EDS – RECORDING AVAILABLE
On May 7th, Dr. Staci Kallish spoke about cardiac manifestations in EDS. EDS Awareness’ Doctor Speaker Series is a webinar program hosted by EDSawareness.com and sponsored by www.bodysupportstore.com Upcoming FREE sessions will be offered the 1st and 3rd Wednesdays of each month. Hope you can join us! CLICK HERE for the recording More about Dr. Staci Kallish Click […]
Is a Fractured Bone Child Abuse or Ehlers-Danlos Syndrome?
There has been much discussion lately about parents being accused of child abuse when taking their children to the ER with a dislocated joint or fractured bones. By Vincent Iannelli, M.D. “Bone broke, me fix.” “That’s the running joke in medical school about orthopedic surgeons. Of course, there is a lot more to treating broken bones […]
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 […]
Trissanna Has Ehlers-Danlos and is Helped by Local Variety Club
This BC Variety Club is a Children’s Charity Helping those in need specifically Trissanna who has Ehlers Danlos Syndrome. by Carol Aun – Mission City Record “From the minute she wakes up Trissanna Hunter feels the pain in her joints, the cracks in her bones. If she was older, like her grandmother, she would simply she […]
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 […]
