Welcome To My Blog...

This blog follows my journey of 2 different cochlear implants and my condition: Multiple mitochondrial DNA deletions I have started this blog 15 yrs too late but ill try my best to fit it all in! I have packed a lot of medical jargon into my life since I was 8.

There has been happiness and tears but I've come through it all with my family and my friends.I'm profoundly deaf as a result of a condition called Multiple mitochondrial DNA deletions or mitochondrial disease RRM2B as my professor Sir Dough Turnbull calls it! I have had since birth but I didn't find out this til I was 19. I have had 2 cochlear implants (at the age of 8 and then i lost the 1st cochlear implant in my right ear after 7 years due to a bad, accruing ear infection (which I couldnt fight off because of my mitochondrial condition) at the age of 15 and had a 2nd one implanted in my left ear that same year which I have now.

My Story

19 July 2019

RRM2B study

Apologies for the long time away I’ve had difficulties logging in to my blog!

Last weekend I travelled to Newcastle and stayed in a hotel to do the RRM2B study as paid for by the lily foundation or research. It was a busy two days of testa. Before hand I wore a watch which recorded all my heart n sleep patterns and also a stool sample ( which wasn’t the easiest task to do haha)  ands my mum had to note down every poo and what I ate 4 weeks before the Study in Newcastle 

I arrived at the hospital with my parents and met the doctors.we went through the ins and outs of the test and consenting to do the study. Of course I couldn’t have the MRI scan because of my cochlear implant which was fine.

I had TEN vials of blood and although they were concentrated about my arms and the muscle mass. My right arm is bigger than my left .
We then sis some  exercise an lot of walking with Zimmer frame (my walking hasn’t been the same since I was in intensive care last year)  we did normal walking and fast walking to compare the two.
I then was given a mental test on a timer 

I was then asked to fast overnight and at the hospital did a urine test. That was the end of the tests and the docs  will do the tests again next year ,

 Fo now I earned a good rest!