Twiggy: Saving a Life for Vascular Ehlers Danlos
Patient Stories of Hope and Inspiration ‘Meet Barbara!’ On most days, Vascular Ehlers Danlos takes a back seat in my life, thanks to a magical creature continually by my side. Twiggy. Twiggy, a Unicorn for Vascular Ehlers Danlos Awareness can be found on my Facebook Page HERE. Twiggy, as seen on my lap [...]
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 [...]
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 death. In my family we’re dealing with a connective tissue disorder called Vascular Ehlers-Danlos Syndrome (VEDS) and because patients can look and act perfectly normal — and might even have “normal” vital signs, EMT’s [...]
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 [...]
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 disorder in which the body’s ability to produce enough collagen is severely limited due to genetic mutations. In 1998, my first husband died from the Vascular form of EDS; two weeks later my son was [...]