Besides being the once-every-four-years extra day in February, today is also Rare Disease Day. This is the day when we raise awareness and advocate for those with rare diseases.
Our fourteen year old daughter, Amber, has the rare disease Ehlers Danlos Syndrome. It is a connective tissue disease that has resulted in many complications for Amber, including dysautonomia. It's also a somewhat invisible condition, meaning on first glance it's hard to understand how deeply EDS affects Amber.
Today I'd like to bring awareness to Ehlers Danlos Syndrome for everyone who bravely struggles through daily life with EDS.
For more information on Rare Disease Day or Ehlers Danlos Syndrome, please follow the links below.
Christy, is Ehlers Danlos Syndrome a progressive disease? Or is it quite stable? Thank you for sharing this, I now understand a bit more about how it effects Amber. You guys are so fantastic about coping with it.
Claire, it depends on the person. Right now, Amber's is not stable at all. She's still growing and her joints are constantly showing more problems. She has other EDS related problems that are also progressing. She's in physical therapy to help stabilize her joints, but since she's growing so rapidly we never quite get to stable joints.