A BURY family are celebrating three years of raising awareness of their daughter’s rare and life-threatening condition.
Jared and Sarah Griffin were first told in December, 2012 that daughter Annabelle, then aged three, had Vascular Ehlers-Danlos Syndrome (VEDS) — meaning the slightest knock could send her to hospital.
The incurable genetic condition causes collagen deficiency and means she is at daily risk of her internal organs and arteries spontaneously rupturing.
Would you like to speak to others living with EDS and HSD but can’t get to any support group meetings, events, or conferences?
Our weekly, monthly, and quarterly virtual support groups for people from all over the world are a chance to come and share your story and chat with others for support.
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