Friday, August 16, 2013

Fingers Crossed!

Hi Everyone,

I hope this new post finds you pain free and happy.

Well Tris and I went to St Helier Hospital today to have our new gene test. I know I have posted before and said that we had our 'last gene test' but sadly it wasn't the case. My genetic cousellor in New Zealand retired last year and Dr Juliet Taylor, who took over his clinic, said that new research is happening all the time with EDS and that there are new genetic conditions being discovered. She emailed me after we arrived in London and suggested that we should have another genetic test to be absolutely sure that we only have Classical EDS and nothing else.

So we arrived at the clinic today and meet a lovely doctor called Dr Katrina Tatton Brown. She welcomed us and began to talk and straight away I interrupted her (which I apologised for). I said that under no circumstance was she to tell us what we were being tested for. I did not want to know and I did not want to go home and google it until my eyes bled. She was amazing about it and totally understood.

I am so pleased I didn't ask what the 'THING' was and she was very cool about not saying. Our results will come back in 6 - 8 months due to the fact that they need to search for 3 separate genes in our DNA. I told her that we had to know definitely what we have this time, not what we don't have and she said she these test will find out. 

So there you go and I am determined not to be a slave to 'worry' for the next 6 - 8 months either. Last time that I waited for our results was a nightmare for me. This time around, by not allowing her to tell me the name of the genetic condition, I felt like I had the POWER, in an environment where I have always felt powerless. 

With the help of Louise Hay, I am putting it out to the universe that my son and I only have Classical EDS and that we are healthy and happy and having amazing lives living in London.

Fingers crossed can't hurt either!!!!!

Love Rowena XXXXXXXX