Archive for the ‘Parenting’ Category

Ian’s Story: A 4-Year-Old Living with EDS

Posted on July 27, 2016

By Taylor Barth   LINCOLN, Neb. — Ehlers-Danlos Syndrome is a disorder that only impacts about 1 in 2,500 people. According to the Ehlers-Danlos Society, it’s under and mis-diagnosed. For about a year, one Lincoln family has helped their son learn to cope with the syndrome. By sharing his story, they hope to help raise […]

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Family with Humor and Faith Managing Their Ehlers-Danlos Syndrome

Posted on August 10, 2015

This Cincinnati family has 4 members with Ehlers-Danlos. Their strong faith gives them courage to persevere. They believe their childrens’ challenges have helped them to grow and become better people. Amy Schulze and her daughter, Elizabeth, lead 2 support groups for EDSers. By Sue Kiesewetter, Enquirer contributor. FAIRFIELD TWP. – Seventeen-year-old Elizabeth “Wizzy” Schulze used to think being tired […]

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Join Effort by Sending a Birthday Card to Jasmine, Turning 14 with Ehlers-Danlos Syndrome

Posted on August 8, 2015

You can help this courageous EDS girl have “the best 14th Birthday ever” by sending her a Birthday card.  Include your encouragement, motivational songs, or positive story — to show her you understand the struggles of EDS.  Her Birthday is August 31st, so get your wishes in the mail!  Address provided below.  __ Watch Jazzy’s story in […]

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Mom with Ehlers-Danlos Syndrome Gets a Grant to Pay for a Scooter

Posted on April 6, 2015

This UK mom is now more mobile!  After receiving a grant for a scooter, she can now spend more quality time with her kids. By Tom Murphy of the Westmorland Gazette. AN EDEN mum-of-two who suffers from a life-changing syndrome is looking forward to regaining her independence after receiving a £500 grant to pay for a […]

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How Can Schools Better Understand Ehlers Danlos Syndrome?

Posted on March 30, 2015

The pressures from the school environment are difficult enough when a student is well.  EDS students have more challenges than the average student,and need the cooperation of the school administration and teachers.   By Jenny – Cheetahs In My Shoes “As both a parent of 2 children with Ehlers Danlos Syndrome (or if it isn’t, something […]

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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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Current Poll

How long until you received a proper diagnosis for EDS?

  • >20 years (53%, 2,803 Votes)
  • 10-20 years (17%, 927 Votes)
  • 2-5 years (13%, 665 Votes)
  • 5-10 years (12%, 653 Votes)
  • 1 year (5%, 264 Votes)

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