Caregivers
How to Help Your Ehlers-Danlos Caregiver
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, […]
Pokemon is Favorite Game for Cameron Who has Ehlers-Danlos Syndrome
Pokemon is Cameron’s way to show the world how proficient he is with card games. “A mother who set up Dunstable’s first Pokemon club so her poorly son could play his favourite game is handing over the reigns after five years. In that time, 14-year-old Cameron Dilley – who has chronic fatigue due to Ehlers-Danlos […]
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 […]
12 Ways to Help a Nauseous or Unhappy EDS Stomach
by Yvette Thomas If you have Gastrointestinal problems that frequently accompany EDS, here are some helpful suggestions from an EDS Support Group member. (Always consult your doctor first.) 1. Small meals always. Try not to go a long time in between eating. Always carry a little snack with you. Something protein-based like string cheese or nuts. […]
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 […]
Being Your Own Advocate
Author: Jonathan Rodis President-Massachusetts Chapter of the National Marfan Foundation Head-EDS Massachusetts and New England Support Group “Wow..how many times have you or loved one or a friend been told something totally wrong about your condition from a doctor? Of course, I know the answer…many, many, many times. The worst imaginable place to hear it […]
