Archive for the ‘Family’ Category

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Concern Over Subsidised Water Bills for Ehlers Danlos Syndrome

Posted on October 10, 2014

This Irish mother feels the uncertainty over special water allowance limits are an “insult to the ill”. Her daughter, Lauren, has EDS and intestinal failure. It requires extensive water usage to manage her condition. The government and water department are to publish a list of illnesses which will allow sufferers to have their water bills capped. However, Lauren and her […]

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Ehlers Danlos Syndrome Support Group is starting in Rochdale, UK

Posted on October 7, 2014

 Rachel Hastie is forming an EDS Support Group for her daughters and to help raise EDS Awareness. Her youngest daughter, Ellicia Grace, is showing signs of Vascular EDS. By Amy Westlake. “A support group to help those with Ehlers Danlos Syndrome (EDS) has been set up in Rochdale by former Smithy Bridge resident, Rachel Hastie […]

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Proper Diagnosis Helps Family Deal with Ehlers Danlos Syndrome

Posted on October 2, 2014

Diagnosis is the first step in treatment of Ehlers Danlos Syndrome.  Yet, 95% of sufferers remain undiagnosed*. 50 percent of patients waited more than 20 years to receive a proper diagnosis, according to the EDSawareness.com poll. “Charlie Howram can dislocate a finger just by pulling up his socks – but, until he was four, the fact […]

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Mother-Daughter Duo Use Ehlers Danlos Syndrome to Give Back

Posted on September 23, 2014

By Alia Blackburn. Five-year-old Amelia and her mother are raising EDS Awareness in hospitals.  They give packages containing personal-care items to help hospital patients, and use the opportunity to share about Ehlers-Danlos Syndrome.   CLICK THE PICTURE TO WATCH THE VIDEO. Looking at Brandy Gibson and her 5-year-old daughter, Amelia, you will notice the bond they share is inevitable. […]

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Jessica Participates in the first “Conquer Chiari Walk Across America”

Posted on September 19, 2014

Jessica Paddack has endured many surgeries throughout her 15 year battle with Chiari malformation. One of her Chiari surgeries led to the discovery of her Ehlers-Danlos Syndrome. The “Conquer Chiari Walk Across America” is this Saturday. By: RENE RAY DE LA CRUZ. The walk will be one of many across the country designed to raise funds for research, education and awareness programs. […]

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EDS Awareness Educational Series – Recording Available

Posted on September 17, 2014

Listen to this FREE online learning session about EDS & Psychiatric illness misdiagnoses by Dr. Richard Barnum, Psychiatrist. How can families handle situations where they feel misunderstood by their healthcare providers? Unfortunately, many EDSers are misdiagnosed with psychiatric conditions before their Ehlers-Danlos, Dysautonomia or associated physical conditions are identified. Dr. Barnum addresses what can happen in extreme […]

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“Pain Awareness Month” to raise awareness of the U.S. Pain Foundation

Posted on September 14, 2014

September is “Pain Awareness Month” in Scituate, RI and several other U.S. towns. Advocates are raising awareness of  chronic pain conditions and the U.S. Pain Foundation.  Stuart and Ellen Lenox Smith have been very active with the U.S. Pain Foundation and EDS Awareness for Ehlers-Danlos Syndrome. Their “Pain Awareness Event” at Miriam Hospital in Providence on Saturday, Sept. 27th will conclude […]

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Tennis Coach Gives Hope to Teen with Ehlers Danlos Syndrome

Posted on September 6, 2014

Megan has a new motivation to stay active despite Ehlers Danlos Syndrome. Her high-school tennis coach has paved the way for her to participate in modified varsity competition! Her strength and dedication has inspired her coach and peers. Megan also participates in the EDS support group in Columbus, Ohio. By Steve Blackledge “Les Somogyi couldn’t help but feel for […]

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