My Pilates journey. At the medical conferences that I attend, be it related to Charcot Marie Tooth disease (CMT), Ehlers-Danlos syndrome (EDS) or for EDS kids, people ask the experts…
I’ve posted before regarding school. I knew it was a very emotive issue in our house but I was overwhelmed by the passionate responses from other people. My…
This is important and I apologise if this section is a bit heavy but it is a bit of a minefield for parents, particularly those new to the…
When I wrote about school last year in my series of blog posts ‘Dear Teacher…’ the response was phenomenal and they still remain the most popular posts I’ve…
My Relationship With ‘it’ Looking back, way back it has always been there, lurking in the background ready to pounce but the first real memory I have of it really…
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…
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…
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…