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…
I was diagnosed with CMT by accident after a complication when I had my first baby left my in pain, almost unable to walk. When investigating the cause…
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…
Before Before I was accepted on to the Pain Rehabilitation Programme at Stanmore I knew that something had to change. Life was getting gradually harder, pain was steadily…
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 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…
