Archive for the ‘Ehlers-Danlos Symptoms’ Category

Boston Walk to Support Marfans/EDS Research

Posted on June 18, 2017

By  John Lynds, Times Staff: Just before she turned 3-years-old, Beth Villani’s daughter, Hannah was diagnosed with Ehlers-Danlos Syndrome. “Our daughter was diagnosed in January at just age 2 years and 10 months,” said Villani. “I will be honest and say that hearing that news broke my heart.  When the doctor told me we would […]

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Video – 5 Tips for Managing Persistent Pain

Posted on May 26, 2017

Learn ways to reduce persistent pain by listening to a physician talk about her personal journey through pain and recovery. Dr. Bluestein says “in my wildest dreams, I never imagined that I would return to the very same clinic I had trained in as a physician … 18 years later … as a patient!   […]

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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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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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New Zealand EDS Patients told “It’s all in Your Head”

Posted on August 12, 2016

BY: THOMAS HEATON AND DAVID MAIDA             . . . . The syndrome causes abnormal collagen synthesis, which means that although the body produces it, the collagen is weaker and causes the joints and its connective tissue to become loose. Auckland-based Dr Fraser Burling, an expert in chronic soft tissue injuries, said […]

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“Every day I wake up is a blessing” … despite Ehlers-Danlos Syndrome

Posted on July 4, 2016

By Richard Salit, Journal Staff Writer. Ellen Lenox Smith’s recurring injuries and ailments were as baffling as they were disabling. Some doctors thought they might even be psychological. Why was she always in such pain? Why did she have difficulty swallowing? Why did she keep tearing cartilage and ligaments in her knees and shoulders? And […]

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Free Webinar: “Mast Cell Activation Syndrome in EDS Patients (Part 2)” – Recording Available

Posted on April 19, 2016

Watch the recording of this free webinar. Sponsored by  . . . . TOPIC:  “Mast Cell Activation Syndrome in EDS Patients (Part 2)” . . PRESENTER:   Anne Maitland, MD, PhD – Director for Comprehensive Allergy & Asthma Care and the new Mast Cell Activation Center of New York       Click IMAGE here for a link to […]

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