Archive for the ‘Managing Symptoms’ Category

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Kristin Means Discusses Her Journey with EDS

Posted on May 4, 2017

Many Ehlers-Danlos Syndromes (EDS) experts believe that its prevelance is higher than once thought. Estimates range from 1 in 500 to 1 in 100.   Dr. Fraser C. Henderson, Sr., MD, comments in this video that “1 in 10 Americans have hypermobility connective tissue disorders. That’s 30 million people – and we don’t know exactly […]

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New Clinic for Ehlers-Danlos Syndrome in Ontario

Posted on February 27, 2017

The Canadian Press Published Monday, February 27, 2017 The Ontario government said Monday that it was improving access to specialized care for people living with rare diseases. Health Minister Eric Hoskins announced the opening of a new clinic for people with Ehlers-Danlos Syndrome and the expansion of clinics for those with inherited metabolic disorders and […]

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Telling My Teammates “I Have Ehlers-Danlos Syndrome”

Posted on February 25, 2017

By KYLE GRABOWSKI @kylegrbwsk NORTHAMPTON — Hannalise Rivera-Lovett jumped to intercept a pass. She was playing in a summer league basketball game at JFK Middle School between her sophomore and junior seasons to stay fresh for the winter. Everything above her knee went one way, everything below went the other. The torque caused a subluxation […]

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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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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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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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