EDS Diagnosis
Woman with Ehlers-Danlos Syndrome (EDS) Has Painful Dislocations 10 Times a Day
When Jojo was diagnosed with EDS, she felt relieved! “Finally, I had an answer to why my body is the way it is.” Her EDS went undiagnosed for 24 years! This is not surprising, as our poll indicates more than 50% of EDS patients wait more than 20 years for a proper diagnosis.
Foot Amputation Offers Relief and Hope for Ehlers Danlos Syndrome Sufferer
After a controversial surgery, Elisha Morgan feels she made the right decision to amputate her foot. She is hopeful. Her surgeon and her family have been supportive. (Part 2 of 3)
Cleveland Clinic webinar on “POTs, Syncope and Other Autonomic Disorders” held November 12, 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 […]
Study Indicates Postural Orthostatic Tachycardia Syndrome (POTS) Predominantly Affects Young Women
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, […]
Is a Fractured Bone Child Abuse or Ehlers-Danlos Syndrome?
There has been much discussion lately about parents being accused of child abuse when taking their children to the ER with a dislocated joint or fractured bones. By Vincent Iannelli, M.D. “Bone broke, me fix.” “That’s the running joke in medical school about orthopedic surgeons. Of course, there is a lot more to treating broken bones […]
Chronically in Pain and in Love – POTS and Ehlers-Danlos Syndrome
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 […]
CrowdMed.com Website Helps Solve “Medical Mysteries”
CrowdMed.com helps patients collaborate with others as they explore rare medical conditions, such as Ehlers-Danlos Syndrome. Many have received suggestions that they can research and take to their doctor. Always consult your doctor first. BY: Kate Merrill NEWBURYPORT (CBS) – “Only a few years ago dancing, art, and music came easy to Diana Cleaveland. Now the 51-year-old […]
What’s your opinion? 23andMe Genetic Testing Debate-RECORDING NOW AVAILABLE
Listen to a debate about ethical and legal issues of direct-to-consumer genetic testing. Link is provided below. The debate was spurred on November 22, when the FDA ordered the 23andMe company to stop marketing its product– $99 genetic test offered direct-to-consumers. The FDA warning letter indicated that the company hadn’t secured marketing authorization and expressed concern that inaccurate results could […]
