Author Archive

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“Grey’s Anatomy” Ehlers-Danlos Episode

Posted on October 24, 2016

BY Kaytlyn Leslie of the Tribune News. Watch this video about the EDS patient who inspired the Ehlers-Danlos portrayal in the Oct. 13 episode of the TV show “Grey’s Anatomy”. Olivia Herzoff, 19, has Ehlers-Danlos syndrome, a rare connective tissue disorder that gives her constant pain and a range of related medical issues. An Oct. […]

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High Tryptase Associated with Dysautonomia and POTS

Posted on October 18, 2016

Scientists at the National Institutes of Health have identified a genetic explanation for a syndrome characterized by multiple frustrating and difficult-to-treat symptoms, including dizziness and lightheadedness, skin flushing and itching, gastrointestinal complaints, chronic pain, and bone and joint problems. Some people who experience these diverse symptoms have elevated levels of tryptase — a protein in […]

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EDS, POTS and MCAS Linked by One Gene Mutation

Posted on October 17, 2016

Author: Kate Horowitz On a good day, my shoulders, knees, and hips will dislocate two to five times apiece. The slightest bump into a table or door will bloom new bruises on my arms and legs or tear a gash in the thin skin on my hands. My blood pressure will plummet each time I stand, […]

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Family Struggles With Ehlers-Danlos Syndrome

Posted on October 14, 2016

By Mary Thomsen Courtesy of the Valders Journal The full calendar in the Schmitz kitchen does not quite paint the picture of a typical month for an active family, but every appointment helps the family get on with life. “My calendar, it probably looks like everyone else’s, only it’s not for sports,” Carol Schmitz said, […]

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Dayton Zebras Conquer Ehlers-Danlos, Chiari Walk Across America 5K

Posted on October 1, 2016

        On September 17, 2016 the Dayton Zebras participated in the Conquer Chiari Walk Across America 5K in Beavercreek, OH. This year the Dayton Zebras set up a selfie booth and EDS awareness table. We reached many people that had never heard of EDS. We were also able to reach people that did […]

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Presentation & Round Table Discussion with children with EDS

Posted on September 21, 2016

Thank you all for taking the time to come to UIC College of Medicine on 9/21/2016 to let us learn about EDS. We all really enjoyed the talk and learned how to diagnose this collagen disorder! We met children with Ehlers-Danlos-Syndrome to hear their stories. Members of the EDS Chicago Support and Awareness group presented […]

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Nursing Management of Patients with Ehlers–Danlos Syndrome

Posted on September 19, 2016

By Linda K. Anderson, BSN 38 AJN ▼ July 2015 ▼ Vol. 115, No. 7 ajnonline.com CE 2.5 Ehlers–Danlos syndrome (EDS) refers to a group of hereditary connective tissue disorders which together affect an estimated one in 5,000 persons worldwide.1 The condition is likely underdiagnosed because of a lack of familiarity with its various manifestations and a […]

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Ehlers-Danlos and Chiari at the Olympics in RIO

Posted on August 29, 2016

By RDR Staff  . . .  Allysa is known for her competitiveness, determination and breaking barriers mindset. In 2015, she became the paratriathlete world champion, now she will be heading to Rio for the 2016 Paralympics to try and further her success as a paratriathlete. . . . . Diagnosis   In 2010, Allysa was diagnosed […]

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