A total of 5 posts are filed under VEDS
Twiggy: Saving a Life for Vascular Ehlers Danlos
On most days, Vascular Ehlers Danlos takes a back seat in my life, thanks to a magical creature continually by my side.   Twiggy.  Twiggy,… Continue Reading
Emily’s Hope Against Vascular Ehlers-Danlos Syndrome: 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… Continue Reading
Emergencies: Are You Prepared?
Depending on the specific rare disease your family faces, having the right kind of emergency care can mean the difference in life or… Continue Reading
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… Continue Reading
Coming_Unglued_Ehlers_Danlos_ Syndrome
Desperate Measures
This is one of the posts from my blog, “Coming Unglued“, about life with Ehlers-Danlos Syndrome which is a rare connective tissue… Continue Reading

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