Archive for the ‘Caregivers’ Category
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 […]
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 […]
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 […]
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)
Posted on December 15, 2014
Watch this video about a boy with Ehlers Danlos Syndrome whose dream came true! “Eight-year-old Gabriel was officially named an honorary ranger at Yosemite National Park. Gabriel Lavan-Ying, from Gainesville, Florida, has Ehlers-Danlos syndrome, a debilitating and incurable disorder affecting that causes overly flexible joints and effects the skin and blood vessels. But when the Make-A-Wish Foundation […]
Posted on December 13, 2014
Nicola’s story brings awareness to how difficult life can be with hypermobile joints. She is fortunate to have a the help of a supportive fiance and a mother who is a retired nurse. By PETER HENN. Nicola Lynch, of Rainham, Kent, has dislocated her shoulders 80 times and her thumbs 25 times each in the six years since […]
Posted on October 16, 2014
Listen to this webinar about EDS and POTS. Also, watch another video of Dr. Rowe’s webinar for EDS Awareness Educational Series presented in July 2014.
Posted on August 16, 2014
Caregivers are the unsung heroes in the life of the chronically ill. They offer critical support for patients living with Ehlers Danlos Syndrome. Learn 7 practical ways you can appreciate your caregiver and help them manage their additional responsibilities. by Toni Bernhard, J.D. I know how fortunate I am to have a loving caregiver. Although he may not see it this way, […]