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

26 October 2013

newcastle mito day with hearing loss focus group...

Last Friday I went to the Newcastle mitochondrial info day I went last year too and decided to go again as they have new news every year about mitochondrial disease and their research. This year they had a hearing focus group and I decided to go in that focus group as I went in the social networking group last year and me and a fellow mito friend gave out leaflets for our mito adult support group on facebook. it has  over 300 members now and it has helped a lot of adults with mitochondrial disease because on facebook most groups are based on children. Newcastle still had leaflets left over from last year and had them on the table of leaflets to hand out at this years info day!

This year I went in the hearing loss focus group which was interesting although they had one fact wrong which was the first cochlear implants came out in 1997 which was untrue because I got my first cochlear implant in 94 and my dad put the focus group leader right which was funny!

I also got to see some old and new friends that I talk to on facebook which is good since we all live in different places. Susan (co admin of mito adult support group) was there again this year and Catherine Feeny (mito secretary nurse of Doc Turnbull) wanted me and Susan to write an article of our lives with mito in Mito newsletter and tell people about why we set up the group for mito adults so I look forward to doing that!

Gym has taken a backseat for 2 weeks because of  a pain in the heel of my  right foot and we went to see my GP whos great with my mito history and she seems to think its related to my mito because of my feet flop forward when I lie down and relax they don't stay up like normal feet! It seems have got better with resting it and putting on the cream the GP gave us. See how that goes!