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…
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…
An open letter to teachers of children with invisible illness I know that teachers want to do the best for my children, I can see it in their…
An Open Letter To Teachers of Children With Invisible Illness Writing my latest blog entry has been an emotional and cathartic experience. It is based on supporting my…
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…