Twiggy: Saving a Life for Vascular Ehlers Danlos

May 8, 2012

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 in this picture, snuggles and holds on until I feel better.  No matter what happens as a result of my illness, with Twiggy, everything seems to turn out ok.   Like everyone else with Vascular Ehlers Danlos (VEDS) I pray for a treatment, if not for me then for my children who both have inherited VEDS.  As one of the first members of the National Ehlers Danlos Syndrome Foundation, I am the first to suggest their organization when seeking support and important information related to VEDS.

Vascular Ehlers-Danlos syndrome (or vascular EDS) is the disorder of the body’s connective tissue, the material between the cells that give the tissues form and strength. In vascular EDS the body lacks sufficient type III collagen. This is a molecule that contributes to the strength of our skin, intestines, uterus, and most importantly, the blood vessels. We know there is the risk of dying from this condition from childhood to adulthood. We know there are no effective treatments to date. There are no medications to strengthen the tissues or prevent blood vessel ruptures. Surgical technique is often delayed unless there is knowledge that we will die within hours if nothing is done. The tissues are so weak that they fall apart.  The bleeds we experience are very painful. We have what we term ‘cigarette paper’ skin with scars and tears from everyday things like paper cuts which become gaping wounds. We bleed at the joints and experience chronic pain and fatigue.

Recently, I lost another precious family member.  I wonder why I am here at age sixty and she is taken from us in her thirties.  Too many people have suffered and left their lives before me. Twiggy is my magical creature, but what would be more magical is knowing their is treatment available for my children and all who suffer from this life threatening disorder.

Barbara Bellehumeur
State College, PA






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