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 [...]
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 [...]