Our Eds Story
There comes a time in every individual’s life when they embark on a journey of something extraordinary in their realm inspired by a personal experience. For some people this journey includes changing who they are, how they see things, what they do with their money etc. For me, it was starting this foundation for people who suffer from Ehlers-Danlos Syndrome.
Hi! I am a mother of a child who suffers from Ehlers-Danlos Syndrome. My daughter’s name is Andrea and she started experiencing the EDS symptoms at the age of 3. However, we only came to know that she has EDS when she entered high school. Even though she looks healthy and is a beautiful young woman, the EDS makes it difficult for her to lift anything that is over 10 pounds or walk more than a mile.
The journey of watching my daughter suffer from pain that couldn’t be seen or diagnosed until it was too late has been difficult. But it doesn’t have to be this way for the other people. So me and my daughter decided to start a foundation in my daughter’s name to help research and develop a test, diagnosis and treatment for the Ehlers-Danlos Syndrome.
I am sharing my story with you. And I urge you to share your story with us.
Together, we can make a difference!