Archive for the ‘Teens’ Category

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When Food Allergies Are Actually Mast Cell Activation Syndrome

Posted on May 1, 2015

Brynn had a long history of adverse reactions to many foods she was eating, but finally determined it was not traditional food allergies! She has found ways to manage her Mast Cell Activation Syndrome – including EpiPens and a service dog. By Kira Peikoff The Symptoms Brynn Duncan was 11 years old when her stomach started to revolt against food. Frequently […]

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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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Fragile teen wishes to study medicine, spread awareness of Ehlers-Danlos Syndrome

Posted on March 24, 2015

15-year-old Mya Lilly has multiple dislocations each day caused by Ehlers-Danlos syndrome.  When asked if anything on her wish-list was unrelated to medicine or her health, she found it hard to think of one. She wishes for a wheelchair-friendly car and home. She is thankful to return to school and hopes to study medicine after graduating. She is passionate about EDS Awareness. By SARAH […]

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Gabrielle’s Personal Battle with Ehlers-Danlos Syndrome

Posted on January 20, 2015

After being diagnosed with Ehlers-Danlos Syndrome, high-school student Gabrielle found comfort with members of the Young Life organization. She found purpose and motivation through her renewed spiritual connection. “Right after I got diagnosed with Ehlers-Danlos Syndrome (EDS) and figured out I could not play volleyball, I truly was devastated. I felt like I was missing out […]

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5th Grader with Ehlers-Danlos Joins OSU Women’s Hockey Team: Watch VIDEO

Posted on January 7, 2015

Watch this fun video of 10-year-old Erin joining the Ohio State Hockey Team through a program called Team IMPACT. Since Ehlers-Danlos makes Erin more susceptible to injury, it’s unlikely she’ll be able to participate in sports with her peers. But, spending time with the Buckeyes gives Erin the experience of being on a team. Erin has gained the […]

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“POTs and EDS” Webinar by Dr. Henry Burkholder – Recording Available

Posted on January 6, 2015

  EDS Awareness invites you to watch this FREE webinar recording!    Sponsored by: www.bodysupportstore.com     Dr. Henry Burkholder  presents “Postural Orthostatic Tachycardia Syndrome (POTs) and EDS”. He is a Pediatric Cardiologist and presenter at the 2014 EDNF Conference in Houston, TX.         PRESENTER:  Dr. Henry Burkholder, Pediatric Cardiologist   TOPIC:   Postural Orthostatic […]

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4th Grade Ehlers Danlos Student Receives Statewide Award

Posted on January 5, 2015

Dominic McMinn was chosen for this year’s “Every Student Succeeding” award and scholarship in California. An Ehlers Danlos student in the Accelerated Reading Program, he’s not only excelled academically, but overcome great physical hurdles.  He is also the the youngest award recipient. Congratulations on your accomplishments, Dominic! Submitted to the Appeal-Democrat.   “Dominic was named this year’s Region […]

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Maddison Parker Meets with Australia’s Prime Minister to Discuss Ehlers Danlos Syndrome

Posted on October 13, 2014

Maddison is at it again!  This ambitious 11-year-old had a successful meeting with Australia’s Prime Minister! She asked for five minutes and got 30! She feels she got her message across and that it will yield positive results in promoting EDS Awareness and a possible EDS clinic in Australia. PRIME Minister Tony Abbott will fly the flag for Ehlers Danlos […]

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