Archive for the ‘Parenting’ Category
Posted on March 20, 2015
Ehlers-Danlos Syndrome makes it difficult for Kristina to accomplish daily living tasks. But, she has been refused disability benefits in Australia on the basis that her condition is ‘curable’. She has trouble driving to her doctor appointments without pain and dislocation. She wants to spread awareness by sharing how EDS affects her daily life. By: Margaret Burin (ABC […]
Posted on January 17, 2015
The local community responds to a hospital fundraiser for Toby and buys him a new wheelchair – just in time for Christmas! A ten-year-old who struggles every day with pain and exhaustion due to a debilitating condition can ‘take his independence back’ thanks to a Christmas boost. Toby Skerman was diagnosed with complex Ehlers-Danlos syndrome […]
Posted on September 6, 2014
Megan has a new motivation to stay active despite Ehlers Danlos Syndrome. Her high-school tennis coach has paved the way for her to participate in modified varsity competition! Her strength and dedication has inspired her coach and peers. Megan also participates in the EDS support group in Columbus, Ohio. By Steve Blackledge “Les Somogyi couldn’t help but feel for […]
Posted on September 5, 2014
Megan is a talented artist with Hypermobile EDS. Watch her video story featured on a Philadelphia TV news station. This is a good example of how patients can spread awareness of Ehlers Danlos Syndrome in their local communities. Watch the video EDS Awareness Notes: In media reports, there tend to be some inaccuracies or misleading statements. We wanted to […]
Posted on August 16, 2014
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, […]
Posted on August 12, 2014
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 […]
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 […]
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 […]