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 which I have had since birth but I didnt find out this til I was 19. I have had 2 cochlear implants (at the age of 8 and then 15) I lost the 1st cochlear implant in my right ear after 7 years due to a bad, accuring 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


27 March 2014

three parent IVF

i have seen on the news this week and on bbc The one show and it was talking about the pros and cons of the three parent IVF treatment for people who arent strong enough to carry a baby to term or pass on mitochondrial disease like me 
i might want a family one day but NOT if  it can pass my mito disease on to baby! Thats what the good thing about three parent IVF is about and could help loads of other people in my situation who want a healthy child like any normal person wants!

Above is a video that explains how three parent IVF works!

weak neck...

i have been overdoing it lately and i think its catching up with me :( i have been struggling to sleep due to my achey muscles and get comfortable and a few late nights! (i know! naughty me!!) i think ill take it easy the next few days! 
my neck and arms are the worst affected at mo i couldnt even manage to put my cochlear implant on with out getting out of breath and had to rest! im feeling a bit deflated but i will get there!  Always do!

23 March 2014

joints...

The last few days have been hard but yesterday i particularity felt my pain! although i wouldnt say it was pain more like extreme weakness of my muscles making my muscles ache  sort of like a person does lots of exercise and has to rest but in my case it can take a while to get back to normal. The reason for all this pain i think is ive been overdoing it! i like to keep busy and thats my downfall sometimes!! lol i have been doing a lot of cross stitching which has taken it toll on my arm and wrist  and ive had 2 last busy weekends with family events whcih i was tired for. 
i dont really show how weak i am to family and friends when i see them but they understand coz they all know i have mitochondrial and some have seen me at my worst in hospital ( even if i didnt know it at the time!) 
i try not to let it get me down coz i know it will get better after some rest just my body telling me i need to slow down a bit and get some sleep and rest1!! 
i particularly had pain in my joints and my lower back this time which makes it hard to walk and do things normally such as brush my hair or get a cup of tea 
thankfully i have nothing left on my calender til April now i think! and i will chill out with my carer Victoria on Tuesday!
Next mito appointment - April yearly meet up with Prof Turnbull the dietitian the eye doc and hopefully getting the results of the blood tests they took from my parents and me in December! so that will be interesting learning!