Archive for the ‘Family’ Category

blog-post-thumbnail
Emma is Raising Awareness of Hypermobility Syndrome

Posted on July 20, 2014

This upbeat UK teenager has overly flexible joints and chronic pain. Emma hopes to use her experience to raise awareness of Hypermobility Syndrome and help give back. “An inspirational teenager is hoping to raise awareness of a debilitating medical condition which can leave her in constant pain, exhausted and bed-bound for days. Emma Beauchamp was a sporty […]

Read More

blog-post-thumbnail
Girl with Ehlers Danlos Syndrome Wins Beauty Pageant

Posted on July 19, 2014

Eleven-year-old Hayley continues to compete in beauty pageants despite her struggles with Ehlers Danlos Syndrome.  Hayley uses this as a platform for fundraising and to spread EDS awareness! It’s a family-orientated competition where entrants must take part in a community project – extra points are awarded to those raising money for charity and helping in the community. By Exeter Express & Echo […]

Read More

blog-post-thumbnail
Vote for EDSer Finalist in “Inspire a Future Scientist” Contest

Posted on July 13, 2014

Claire Seiler created a video for her 4-H contest. Supporters can vote once per day through Aug. 1st. This 16-year-old EDSer is interested in tissue engineering to find a way to engineer collagen. The winner of this contest will receive a $1,000 scholarship and trip to Washington D.C.  “Wood County 4-H’er Claire Seiler, an 10-year member of the Colorful Clovers 4-H […]

Read More

blog-post-thumbnail
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 […]

Read More

blog-post-thumbnail
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 […]

Read More

blog-post-thumbnail
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 […]

Read More

blog-post-thumbnail
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 […]

Read More

blog-post-thumbnail
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 […]

Read More

Get Webinar Announcements And Our FREE Guide

Support EDS Awareness

See all upcoming events

Current Poll

How long until you received a proper diagnosis for EDS?

View Results

Loading ... Loading ...