Last month we attended an appointment with one of our children where the consultant opened, without knowing our family, by saying that he didn’t believe in their hEDS…
Thirteen years ago I gave birth to my first child, as he enters adolescence (and I wonder how that could be possible) I realise a lot has changed…
la·beled, la·bel·ing, la·bels or la·belled or la·bel·ling 1. To attach a label to 2. To identify or designate with a descriptive term; describe or classify This last year there has been much talk about labelling our children. Everyone has an interest in the debate. Doctors, school, family. Who really has…
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…
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’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…
This week one of my daughters school friends had a diagnosis of type1 diabetes. He’s just 5 and has been her boyfriend since nursery. I can not begin…
This was a post I made last year for awareness month as part of EDS UK’s share your story campaign. Its a little dated in terms of how…
