Emily’s Hope: A Lesson for Us All
The WHOLE WIDE WORLD should know there is a girl in central Florida with a beautiful smile, and an even more beautiful soul whose name is Emily and who is in very, very poor health right now. To say she is fighting Vascular Ehlers-Danlos syndrome would be serious enough; but for Emily, vEDS is just … Read more
Research at Johns’ Hopkins Offers Hope for EDS
Update – 2/4/2011: The information contained in this article is published with the permission of EDS Network C.A.R.E.S., for whom this letter was originally written by Dr. Dietz. It’s through the relentless pursuit and dedication of this group that this project is happening at all. They are a fabulous group of patients, families, and friends … Read more
The Council of Mothers (and a few devoted dads)
The Council of Mothers (and a few devoted dads) convenes as necessary in the wee hours of the morning, the midday afternoon on holidays, the Tuesdays after checkups and at all other times deemed necessary by its members. Together we share one another’s questions, worries, and our greatest common fear – the loss of our … Read more
Letting Go . . . a little bit . .
Standing shoulder to shoulder with hundreds of other parents this past Monday on what turned out to be an absolutely sticky afternoon, I waited with my son as the crowd behind us pressed in. Sixth grade students from all over our county had descended on a parking lot to embark on the week they’d been … Read more
Survey Results: Vascular Type
What Vascular EDS Patients are Saying: The symtoms and percentages listed below are from the informal online survey I’ve had posted for a few weeks now. These results are only for the patients who identified themselves or their loved ones as having the Vascular type of Ehlers-Danlos Syndrome. Also, these results are changing every day … Read more
First Results from EDS Survey
In early 2010, I created an online survey for patients (or their family members) to complete. The idea was to gather some basic information on ourselves as a community because the better informed we are, the more capable we are to advocate for ourselves and our loved ones. So far, more than 220 surveys have … Read more
The Other Side of the Nightmare
Twelve months ago I was forced to face an idea that terrified me. Our local orthopaedic surgeon who was treating my son for the ACL tear in his right knee was telling me – in front of my son no less – that surgery was the only way to stop the worsening damage, keep my … Read more
BIG BAD BULLY STRANGLES STUDENT Blames Teacher & Classmates
A local Schoolyard Bully (a.k.a. Average Health Insurance Company) told a class full of terrified children that if they “know what’s good for them” – no one will tell on him when the teacher comes back. As it turns out, the Bully has been taking lunch money from kids and promising to “take care of them ”. Convincing … Read more
Cardboard Walls
A friend of mine told me once about an experience she had soon after she lost her husband. She was at the family’s home, the day of the funeral, and was mindlessly shaking hands, nodding at people’s condolences, and smiling as best she could. An older woman who my friend knew only remotely took her … Read more
Meet Jeremy
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