Archive for the ‘SYMPTOMS’ Category

Tethered Cord in EDS: A Patient Guide to Symptoms, Diagnostics, Treatments, and Risks

Posted on January 22, 2024

Understanding Tethered Cord Syndrome and Occult Tethered Cord in Ehlers-Danlos Syndrome (Also see the simplified version of this article) Unravelling the tethered cord has proven to be an elusive topic. Basically, there is not a great deal of credible insight or medical research available on it. To start simply, we begin with basic anatomy and […]

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Gut Check: Gluten Intolerance, Celiac Disease, or Mast Cell Reaction?

Posted on August 22, 2023

It is challenging to find the source of our gut problems, so many of us have related to hypermobility. The volunteer media team at Chronic Pain Partners tried to tackle the basics so our readers could have a brief introduction to the variances and testing available for different diagnoses of these often ‘gut-wrenching’ illnesses.  Note: We […]

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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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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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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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