For many years, doctors have been very hesitant to diagnose Ehlers Danlos Syndrome because it is considered to be a rare disease, too rare in fact to diagnose or see a case of during their medical career. However, the truth is that it's not rare, it's rarely diagnosed. It's also a hereditary genetic condition which means that a parent who has it has a 50% chance of passing it on to each one of their children. In the case of my family, I passed it on to all four of my children. EDS is definitely not rare in my family or in many other families either.
In the two short years since my kids and I were first diagnosed with Ehlers Danlos Syndrome, I've noticed a huge increase in the awareness of EDS. The EDS groups on Facebook are growing in leaps and bounds as more people hear about it and realize that this may be the answer to their many unexplained medical issues. More doctors actu
ally know what it is even if they don't necessarily know how to treat it, and it's becoming more common for people to respond with, "I know someone else with that too!" when I tell them that I have it. The Ehlers Danlos Society recently received an anonymous $1 million dollar donation to be used on research of the hypermobile type of EDS which is the most common type. The American Journal of Medical Genetics released new criteria for diagnosed hEDS in March 2017. This is all huge, and we're making amazing strides. It's exactly what I and others with EDS have been fighting for.
