Archive for the ‘Community’ Category

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Award-winning mom’s photo represents “staying positive” despite Ehlers Danlos Syndrome

Posted on July 9, 2014

 Wendy Pitts is an artist who stays positive while juggling 4 kids,  a business and Ehlers-Danlos Syndrome. INSPIRING residents living with long-term conditions and disabilities have been showing off their works of art after winning a competition to tell their story through a picture. Organised by Warrington CCG, judges from the health board’s quality committee had the difficult […]

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A Musical Benefit for Chloe who has Ehlers Danlos – Hypermobility Syndrome

Posted on July 8, 2014

Chloe is determined that EDS/HMS won’t define her life.  She continues to pursue her music, and debuted her first album this year, alongside fellow musician Steve Jones! Chloe’s community will host a musical extravaganza benefit to help with her Ehlers Danlos/Hypermobility Syndrome. By Tara Cox. “A WEST Dorset UK community is rallying round to help chronically ill mum […]

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Ehlers-Danlos Mom Makes Tough Decision For Third Child

Posted on July 7, 2014

Veronica Foale says Ehlers-Danlos Syndrome has not stopped her from having a good quality-of-life.   By Fred Hooper. When Veronica Foale was diagnosed with a genetic disorder she was also told there was a 50 per cent chance she would pass this condition on to her children. She already had two children when she found […]

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Skydivers Fundraise for Toddler with Ehlers Danlos Syndrome

Posted on July 5, 2014

 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 […]

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Music Therapy Helps 11-year-old Battle Ehlers-Danlos and Chiari Malformation

Posted on July 3, 2014

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 […]

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180 Guests Enjoy Ball with Annabelle Griffin & Ehlers Danlos Support UK

Posted on June 30, 2014

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 […]

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“Doctor Speaker Series”: Cardiac manifestations in EDS – RECORDING AVAILABLE

Posted on May 8, 2014

  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 […]

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Is a Fractured Bone Child Abuse or Ehlers-Danlos Syndrome?

Posted on February 12, 2014

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 […]

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