Parenting Ehlers-Danlos
How Can Schools Better Understand Ehlers Danlos Syndrome?
The pressures from the school environment are difficult enough when a student is well. EDS students have more challenges than the average student,and need the cooperation of the school administration and teachers. By Jenny – Cheetahs In My Shoes “As both a parent of 2 children with Ehlers Danlos Syndrome (or if it isn’t, something […]
Ehlers Danlos Syndrome Featured in TV News Story – Watch Video
Megan is a talented artist with Hypermobile EDS. Watch her video story featured on a Philadelphia TV news station. This is a good example of how patients can spread awareness of Ehlers Danlos Syndrome in their local communities. Watch the video EDS Awareness Notes: In media reports, there tend to be some inaccuracies or misleading statements. We wanted to […]
Watch Ehlers-Danlos episode on “Good Morning America” – Video Link
“Good Morning America” reported about Ehlers-Danlos on Friday, 11/29/2013. We are providing a link to Watch the VIDEO of the TV segment. EDS awareness is one positive outcome of the tragic story about the Huber family’s false allegations of child abuse. Their daughter has been diagnosed with Ehlers-Danlos Syndrome. Click here for this story about the Huber family’s false allegations […]
Doctor Speaker Series
EDSawareness.com is excited to be offering this Doctor Speaker Series to our EDS Membership. We are limited in the number of openings so please dial in early (by telephone only) to attend the program. The sessions will be the 1st and 3rd Wednesdays at 9:00 pm EST. Our speaker for September 18 was Dr. Stephane Treyvaud. Dr. Treyvaud is an adult, […]
Attention Doctors: An EDS Patient’s Bill of Rights
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 […]
Hypermobility “Stick Men”
Enjoy the creativity of this EDSer who gets her message across with “stick people” stories, communication cards and signs. At times we need a little humor! Hannah from the U.K. has found an effective way to explain EDS symptoms & needs to the public in a casual and light-hearted tone. Click […]
When EDS Strikes Families
By Sandra Strege-Mims Barr, PhD. Sandra Leads the Ehlers-Danlos Syndrome Local Support Group in Dallas, TX. We will be looking today at the impact that a diagnosis of Ehlers-Danlos Syndrome has on a couple or a family. Most families proceed through day after day earning money from one or two incomes, using that money to […]
