To think carefully about how to help families navigate the education system when their children have an invisible illness like Ehlers-Danlos or Charcot Marie Tooth Disease. I don’t…
I fake my EDS symptoms all the time. Every day. For as long as I can remember. It is second nature, it’s why I am so good at…
1. The illness I live with is: Charcot Marie Tooth Disease, hypermobile Ehlers-Danlos Syndrome (and the lovely symptoms of dysautonomia that go hand in hand with EDS) 2.…
Dear CMT… When you first came into my life it was hard. Those were the darkest and longest two years of my life. I got up every morning…
Shoes, shoes, shoes… Shoes are a girls best friend, you can never have enough, they can make you feel ten feet tall, on top of the world. It’s…
The road to acceptance has been a bumpy one. When I was first diagnosed with CMT I grieved for a long time. My life at this time was…
As I look back at photos of nights out over the last few years, of which there are few, I can see in my eyes how I was…
I question, should we even try to fight for a diagnosis or better care when we have a rare disease… I have been thinking carefully over the last…
I’m not going to dwell on the detailed science involved with EDS and CMT, the genetics behind the conditions so to speak. I may get into that all…
