Twiggy: Saving a Life for Vascular Ehlers Danlos

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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 […]

Emily’s Hope Against Vascular Ehlers-Danlos Syndrome: A Lesson For Us All

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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 […]

Emergencies: Are You Prepared?

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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 […]

Letting Go . . . A Little Bit

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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 […]

Desperate Measures

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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 […]