Archive for the ‘SYMPTOMS’ Category

Cleveland Clinic webinar on “POTs, Syncope and Other Autonomic Disorders” held November 12, 2014

Posted on October 10, 2014

Cleveland Clinic webinar Date: Wednesday, November 12, 2014 Time: 12:00 PM (EST) (See link at the bottom of this article to register) Autonomic disorders are neurological diseases which can affect the cardiovascular system. Syncope, Dysautonomia and POTs (Postural Tachycardia Syndrome) are the most common forms. Over one million Americans are impacted with a primary autonomic […]

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Is it Anxiety, Depression or POTS?

Posted on October 29, 2013

 POTS (postural orthostatic tachycardia syndrome) is a collection of symptoms that may not be easily detected or diagnosed. by Sue Ann Rybak “John Point, of Chestnut Hill, was a typical kid who loved hanging out with his friends on the basketball court. But in the Summer of 2009 he started to have flu-like symptoms: aches, fatigue, […]

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Bruising Can Be a Manifestation of Ehlers-Danlos Syndrome

Posted on September 17, 2013

Ehlers-Danlos Syndrome patients may be sensitive to bruising due to fragile capillaries and blood vessels surrounding the connective tissues. This story tells more about this symptom. by Pavitra Sampath “Mysterious bruises have been appearing on my legs for a while now, mostly on my thighs, but also on my calves. Sometimes they appear and I can […]

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Ehlers-Danlos & the “Spoon Theory” get attention on BBC News

Posted on June 21, 2013

Many EDSers use the “Spoon Theory” to explain their fatigue and limitations due to the acute-chronic pain cycle.  BBC  News presents a series on “insights into disabled life” which shares the “Spoon Theory” with the public audience.  We hope this will increase awareness & understanding of  the compromises we EDSers must make to manage Ehlers-Danlos […]

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Girl with EDS Dies After Drinking Monster Energy Drink!

Posted on March 4, 2013

Monster says its drinks didn’t kill girl, 14. Could the high levels of caffeine in a Monster Energy Drink cause the death of a 14 year old girl with Ehlers-Danlos Syndrome? By JoNel Aleccia, Staff Writer, NBC News “The death of a 14-year-old girl who has become the poster child for banning caffeine-fueled energy drinks can’t be […]

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The Various Forms of Ehlers-Danlos Syndrome

Posted on February 16, 2013

  This article is a very good summary of the various forms of Ehlers-Danlos Syndrome and some recommendations for treatment.   “This article is devoted to a rare genetic and degenerative disease unknown by the public. This illness is incurable, but there is hope today: Gene therapy. If I raise this subject is on the […]

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Explaining Disability​ – Part of What Makes Us Disabled

Posted on January 23, 2013

Author: Jonathan  Rodis President-Massachusetts  Chapter of the National Marfan Foundation Head-EDS Massachusetts  and New England Support Group       “I wanted to share with you something I wrote to  help everyone understand what it is like to be disabled, what it is like to  have an invisible disability, what to do if you find […]

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