I hope this ok to post about a positive medical experience. Please delete if not appropriate. Iv had 2 appointments with the same Dr neurologist that have been the only appointments iv not had to battle through. One was a phone appointment Dr admitted not knowing much about EDS. Dr asked to see me face to face a couple of days later.(This past week). I said yes. I was Dr only appointments that morning. The Dr wanted to more about me EDS I spoke about NHS washing their hands on me about TZC & Jeannie he looked at the resources. I said look iv taken to much of your time Dr said no Ian this is not an normal appointment this takes as long as it takes im learning, i got quite embarrassing & emotional i then realising i why I was there. we went into EDS websites I explained a little that I knew about EDS Echo. Then the appointment changed to more me, more tests & so on. EDS awareness ✅️.

Posted by ian at 2023-05-07 08:23:20 UTC