Archive for the ‘SYMPTOMS’ Category
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 […]
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, […]
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 […]
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 […]
Posted on April 28, 2013
This is a basic, no frills explanation of Ehlers-Danlos Syndrome. Follow one woman’s journey to diagnosis and be encouraged by the positive way she handles changes in her life. We appreciate your Likes and Comments
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 […]
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 […]
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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