This post sums up the whole process of getting my daughter her wheelchair, from referral to her first outing and all the bits in-between. The practicalities and emotions…
We all know how hard it is when someone we love is poorly, when your child is throwing up with a bug, when they are hurt and upset…
I have lived with pain for as long as I can remember, it’s now chronic, it’s never going away. I have Charcot Marie Tooth disease, a neuromuscular disease…
I loved my job. In fact it wasn’t a job to me. It was more like a vocation, I enjoyed getting up on the morning and going to…
Living with EDS and CMT has changed me, I’d be a liar if I didn’t admit it. We tend to automatically think about the parts of our lives…
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’ve been reading a lot lately about autism and the ability of autistic children to hold it together over the course of a day only to explode as…
This week I was asked by my children’s physiotherapist if I could get my children involved in little bit of research on their behalf. They will be presenting…
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…
Invisible illness is part of the package in our house, where Charcot Marie Tooth Disease, Ehlers-Danlos Syndrome as well as the lovely symptoms of dysautinomia are part of life…
