Archive for the ‘Ehlers-Danlos 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 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, […]
Posted on July 5, 2014
On July 5th, supporters of this 3-year-old EDSer jumped at the chance to raise money for his medical equipment. Eleven people, including his mother, actually jumped from a plane! Skydivers are raising money for a toddler with two serious medical conditions. Fundraisers from Burnham and South Woodham are preparing to jump from a plane on Saturday […]
Posted on February 10, 2014
The diagnosis was bittersweet. It was good to finally have an answer …. Ehlers-Danlos Syndrome! By Emily McComas CHARLESTON, W.Va. — Kyli Wolfson was losing hope. “For most of her life, she had struggled with a lack of energy. She couldn’t keep up with her peers in middle school gym class and tried to work with […]
Posted on December 5, 2013
Our presenter for December 4th was Dr. Carl Mentesana, DDS. His topic was: “EDS: A Dental Perspective“ Click Here for the recording Note: the presentation slides start after about 7 minutes into the program Addendum to the Patient Q & A Question: Please post the […]
Posted on November 13, 2013
Don’t miss these videos! Dr. Francomano, EDS expert, talks about Ehlers-Danlos as a multi-dimensional disorder that can profoundly affect quality-of-life. She describes how EDS affects multiple body systems–musculoskeletal, neurological, dermatological, cardiovascular, gastrointestinal, and immunological. She discusses pain, fatigue, autonomic dysfunction, and much more. Chiari, Fibromuscular Dysplasia, CVID, and Mast Cell Activation Disorder are also mentioned. […]
Posted on June 6, 2013
Many EDS patients are struggling to get their doctors to understand their condition. This “Bill of Rights” is a tool that may help EDSers communicate with doctors. By an_angel_with_wings “The purpose of this Bill of Rights is not to be combative or argumentative. I have experienced all of these things during the time that my […]
Posted on June 5, 2013
by Yvette Thomas If you have Gastrointestinal problems that frequently accompany EDS, here are some helpful suggestions from an EDS Support Group member. (Always consult your doctor first.) 1. Small meals always. Try not to go a long time in between eating. Always carry a little snack with you. Something protein-based like string cheese or nuts. […]