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…
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…
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…
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…
Along with my zebra stripes here is a list of the other lovely symptoms that I have collected… There is a lot going on here, I have probably…
I had the great privilege of being invited to my local Child Development Centre. I had one hour in a room with a range of professionals from students…
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…
