Archive for the ‘EDS Diagnosis’ Category

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Study Indicates Postural Orthostatic Tachycardia Syndrome (POTS) Predominantly Affects Young Women

Posted on July 6, 2014

This UK study indicates that POTS patients are predominantly young, well-educated women. Approximately 1/5 were diagnosed with CFS and a similar proportion had Ehlers-Danlos Syndrome, suggesting that there may be an underlying overlapping cause, say the researchers. “A debilitating syndrome that causes an excessively rapid heartbeat on standing up, predominantly affects young well educated women, and blights their lives, […]

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One Third of Chronic Fatigue Syndrome Patients ‘Wrongly Diagnosed’: May Suffer from POTS

Posted on June 14, 2014

Many Ehlers-Danlos patients also struggle with Postural Orthostatic Tachycardia Syndrome (POTS). By Sarah Knapton.   “A third of the people who believe they have Chronic Fatigue Syndrome, or ME, may be suffering from a treatable illness, a professor claims. There is currently no medication for ME, which is characterised by fatigue, muscle aches and memory loss. However, […]

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Doctors’ Ignorance Stands In The Way Of Care For Those with Ehlers-Danlos Syndrome

Posted on May 19, 2014

This story applies to all people with disabilities, and addresses a situation encountered by many patients with Ehlers-Danlos Syndrome. Story by LEANA WEN Picture Katherine Streeter for NPR “Something curious was happening in the emergency room. Eight patients had come in within minutes of each other. Almost instantly, the junior resident, two interns and a medical student […]

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Proper Diagnosis of POTS can Improve Lives

Posted on May 4, 2014

POTS is an invisible disorder that can materialize at the most unsuspecting time and may cause debilitating symptoms.    by Karolyn Coorsh, CTVNews.ca  Canadian doctors are trying to shed light on a mysterious illness in the hopes of prompting earlier diagnosis and treatment for those affected by the rare nervous-system disorder. Postural Tachycardia Syndrome, or POTS, […]

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Tiffany Starts Ehlers-Danlos Organization in Canada

Posted on May 3, 2014

This Canadian woman fought back after discovering she has Ehlers-Danlos Syndrome. By  Julie Slack “Endless determination and strength are words that convey character. Tattooed on Tiffany Skladan’s wrist, they express that and much more. The Milton woman was diagnosed with Ehlers-Danlos Syndrome (EDS) four years ago. The little-known inherited connective tissue disorder impacted her digestive system, […]

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When is Flexible Too Flexible? Ehlers-Danlos Syndrome!

Posted on April 29, 2014

It is interesting that genetics don’t seem to be consistent in this family. By Jeff Leen, The Washington Post. “Mildred Burke had one of the strongest necks in the world. A champion pro wrestler in the 1930s and the first female athlete to earn $1 million, Burke was only 5 feet 2 inches tall, but […]

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British University Designs Physical Therapy Program for Hypermobility Syndrome

Posted on April 6, 2014

UWE Bristol is developing a promising PT program to help patients with Hypermobility Syndrome (JHS). “Physiotherapy researchers at UWE Bristol have come up with a package of treatment and information to help people affected by Joint Hypermobility Syndrome (JHS).” “Physiotherapy researchers at UWE Bristol have come up with a package of treatment and information to help people […]

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Ehlers-Danlos Syndrome Patient is Proactive in Her Therapy Program

Posted on April 1, 2014

Ellen Smith is a remarkable, proactive advocate for EDS Awareness who enjoys helping others learn more about therapy options. Her life has shifted course due to EDS, but Ellen has found a sense of purpose, hope, and fulfillment in working with several organizations. “Ellen Smith has Ehlers-Danlos Syndrome, a progressive degenerative connective tissue disorder characterized by joint hypermobility, […]

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