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

28 October 2016

patient information day 2016

2 weeks ago me and the parents went to newcastle's patient information day 2016 which they do every year its  always interesting to get more information regarding mitochondrial disease and meet up with old and new friends who ive met via facebook!

it was at a hotel this time and felt quite posh as we had name tags round our necks with our names on which we have never done before so it was funny and i felt important! ha ha

this year i was interested in finding out more about the 3 parent IVF which involves taking the "disability" especially hereditary conditions such as mitochondria disease  as maybe one day i might need should i want children. 

i also met up with some friends who i contact via facebook and its good to  see them i had brought my knitted bags for one of my friends faye  who has Leigh's syndrome so she could sell them to raise money for a cure for mitochondira disease and also the lily foundation which i feel useful doing something rather just stay sitting at home all day doing nothing!

i do wish i could do more though but at least this way im doing something!