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…
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…
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…
