Archive for the ‘Parenting’ Category

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Single Mom Dealing with Ehlers-Danlos Syndrome

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 […]

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10 year old Toby with Ehlers-Danlos Syndrome Regains Independence

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 […]

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Tennis Coach Gives Hope to Teen with 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 […]

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Ehlers Danlos Syndrome Featured in TV News Story – Watch Video

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 […]

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How to Help Your Ehlers-Danlos Caregiver

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, […]

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“EDS Awareness Educational Series” Webinar – Recording Available

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 […]

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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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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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