Archive for the ‘Caregivers’ Category

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Young Mom Diagnosed with “Rare” Genetic Disorder

Posted on June 22, 2015

Watch this TV news video about Enedina Stanger’s journey to Ehlers-Danlos diagnosis after the birth of her second child. (KUTV) Michael and Enedina Stanger’s love story started shortly after she graduated high school. The two eventually got married and they had 2 kids. After the birth of their second daughter, Enedina’s health started to deteriorate. […]

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Support For Friends of Hypermobiles/ EDSers

Posted on June 9, 2015

    A new, closed, Facebook group is available for support of friends who are caring for, supporting or living with people who have hypermobility/ EDS. _ _   If you meet these requirements you can join at www.facebook.com/groups/friends.of.hypermobiles. NOTE: no EDSers will be admitted to the group, it is for support people only so that […]

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The Smiths have Worked Year-Round to Spread the Word about Ehlers-Danlos Syndrome

Posted on April 25, 2015

Ellen and Stuart Smith have been very active in the Rhode Island EDS Awareness and Support Group. They are educating and supporting those with this condition and their caregivers. By MELANIE THIBEAULT, Valley Breeze Staff Writer. SCITUATE – Most of 65-year-old Ellen Lenox Smith’s day is spent managing a painful connective tissue disorder called Ehlers-Danlos syndrome, […]

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Fragile teen wishes to study medicine, spread awareness of Ehlers-Danlos Syndrome

Posted on March 24, 2015

15-year-old Mya Lilly has multiple dislocations each day caused by Ehlers-Danlos syndrome.  When asked if anything on her wish-list was unrelated to medicine or her health, she found it hard to think of one. She wishes for a wheelchair-friendly car and home. She is thankful to return to school and hopes to study medicine after graduating. She is passionate about EDS Awareness. By SARAH […]

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Gabrielle’s Personal Battle with Ehlers-Danlos Syndrome

Posted on January 20, 2015

After being diagnosed with Ehlers-Danlos Syndrome, high-school student Gabrielle found comfort with members of the Young Life organization. She found purpose and motivation through her renewed spiritual connection. “Right after I got diagnosed with Ehlers-Danlos Syndrome (EDS) and figured out I could not play volleyball, I truly was devastated. I felt like I was missing out […]

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10 year old Toby with Ehlers-Danlos Syndrome Regains Independence

Posted on January 17, 2015

The local community responds to a hospital fundraiser for Toby and buys him a new wheelchair – just in time for Christmas! A ten-year-old who struggles every day with pain and exhaustion due to a debilitating condition can ‘take his independence back’ thanks to a Christmas boost. Toby Skerman was diagnosed with complex Ehlers-Danlos syndrome […]

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Chronic Pain from Ehlers-Danlos Syndrome Leads to a Drastic Decision

Posted on December 26, 2014

Elisha Morgan’s 8-year struggle with severe foot pain lead to an Ehlers-Danlos diagnosis that changed her life. Her doctors exhausted all treatment options. Now, she considers making a very difficult decision … (Part 1 of 3)

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