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, 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


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?


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


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

Coming_Unglued_Ehlers_Danlos_ Syndrome

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 […]