Community

Maddison Parker to Meet Australian Prime Minister to Discuss Ehlers Danlos Syndrome Research

Maddison Parker is looking forward to having five minutes with Australian Prime Minister Tony Abbott to talk about Ehlers-Danlos Syndrome. Her persistence seems to be paying off – she is awaiting a date and time to be confirmed for the meeting. “MADDISON  Parker is one step closer to getting five minutes with Prime Minister Tony Abbott. […]

How to Help Your Ehlers-Danlos Caregiver

Caregivers are the unsung heroes in the life of the chronically ill.  They offer critical support for patients living with Ehlers Danlos Syndrome.  Learn 7 practical ways you can appreciate your caregiver and help them manage their additional responsibilities.  by Toni Bernhard, J.D.  I know how fortunate I am to have a loving caregiver. Although he may not see it this way, […]

“EDS Awareness Educational Series” Webinar – Recording Available

  EDS Awareness invites you to listen to a FREE online learning session! On August 6, Dr. Derek Neilson’s presented EDS Hypermobility Type and what is needed to change the perception of this condition.       Sponsored by www.bodysupportstore.com    WHAT:  ““EDS Awareness Educational Series” – a webinar program hosted by EDSawareness.com   PRESENTER:   Dr. Derek Neilson – Assistant  Professor […]

Exercise and Lifestyle Therapies are Key to Managing POTS

POTS experts, Dr. Blair Grubb and Dr. Geoffrey Heyer, explain the symptoms and treatments.  Studies have indicated that 1 in 4 of those diagnosed with POTS are disabled. Exercise helps by enhancing the effectiveness of the peripheral skeletal muscle pump, according to Dr. Grubb. By Deborah Kotz.  As a consumer health reporter, I assume I’ve heard of every health […]

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

 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 […]

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

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 […]

Ehlers-Danlos Mom Makes Tough Decision For Third Child

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 […]

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 […]