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 November 2013

Genetic testing...

We received a call yesterday from Newcastle hospital and they said one of the doctors on Professor turnbull's team saying that they wanted some blood from me and my parents  urgently because they want to get started on the genetic testing although there was no chance we could get up there before xmas it's 3 hours away and all the ! so they are coming to Huddersfield to take blood from me and parents and get them straight in the lab!  We will probably get the result next year when I have my annual appointment with  Prof Turnbull. They said that i was the best candidate for this type of research. I cant wait to get the results and see if theres anything in the genes because none of my family have mitochondrial disease!  They dont know if it is coming from my muscles or my bones or genes etc... they said it could be from both parents or just one and maybe a completely new mitochondrial condition either way Prof Turnbull  wants to know why am i like this. 

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!

16 September 2013

mitochondira awareness week

15th to 21st is Mitochondrial awareness week! 
 I want people to know that you probably know someone who has a Mito condition
there are so many different types such as diabetes  and strokes autism MS and many more!
This week is about raising awareness of it! as you know I talk about my own mitochondrial condition which is a rare type called Mitochondrial Multple DNA deletions and it affects people in different ways. I found out when I was 18 even though I went deaf at the age of 8 and no one knew why. Since finding out I have mito my life has changed a lot because its can be isolating with the fact that I couldn't cope with a job or going out with friends etc It also doesn't help that I am profoundly deaf from it which makes it harder to make friends. my confidence was beaten but over the years I have learnt to live with it and I can beat it! :)
I hope to pass this awareness on to bloggers and friends who read this blog because so many people suffer from it!

15 August 2013

Gym...

O M G gym Is getting tougher I set my target of 30 mins on the treadmill but could only manage 15 mins before my legs and I was exhausted! But I will work my way up to it hopefully! I even went on my birthday coz I wanna get stronger! I went for an ice cream after it since it was a nice day. all in all it was a tiring day and couldn't wait for my bed!
THEN my mum decided to wake me up at 9 oclock to see if I wanted to go see nana in Middlesbrough... of course I love seeing my nana but then again I wanted to sleeeeeeep! at least I can have a longer lie in tomorrow! zzz...

1 August 2013

Gym...

My neurologist Mr Turnbull wants me to carry on with gym and concentrate on sociable activities since everything else is doing well he wants me to do gym coz he doesn't want my muscles to seize up and so im also trying to meet new people through gym.

ive gone up to 11stone which is fine according to my dietician but she wants me to try and do more exercise and stick to 10stone so I need to lose some pounds

im starting off slow doing 15 mins on the treadmill and 10 mins on the cycle bike.
it might not sound like much not but il hopefully get better and start doing more and more as time goes on I only go on a Wednesday as I go with my carer Victoria which is good coz she spurs me on which is positive for me

6 July 2013

heat wave!

Its been lovely weather here lately in UK but its a bit too much to take at times. Ever since I have put on weight up to 10st 13 pounds I find that I warm up more easily than I used to when I weighed less so the heat wave we are having is sending sweat everywhere on my body! When I weighed 8stone I could tolerate the heat easily but now I want rain and coolness in the air!!! I dread how im gonna sleep tonight coz these last few days ive had a touch of hayfever I think as I keep sneezing! im trying to keep as cool as possible having two showers a day and lots to drink!

13 June 2013

dietician appointment...

yesterday i had the dietican come round to the house and we discussed my diet, last time i saw her she was trying to get me to put  ON weight because i was 9stone now im 11stone she wants me to lose a stone and stick to the 10 stone! i never know what the hell she awnts from me! first she wanted me to put on weight now she wants me to lose it i look healthy the way i am now but she argues that she doesnt want me to put any more pressure on my hips as it would affect my walking.  so im gonna have to ditch the sweets and crisps....wish me luck!

28 May 2013

3 months on...

3 months on from having my operation on my eyelid it has healed a lot since the last pic its like i never had the cyst! it may be still pink but its better than the cyst!

23 April 2013

update on newcastle trip

Yesterday was my yearly trip to newcastle and when we got there we went straight for the EMG which was a test to test my nerves i had never had one before so i didnt know what to expect but i had  friends who had one before tell me what they are like and that i should be fine! I found most of it uncomfortable and the needle under my knee was the painful twich! We will know the results of the test in 2 weeks.

We then went to see Doc Turbull and his registar Victoria Nesbitt who did some usual tests on me  and also the dietitian who went through my diet and was happy with my weight gain although she would like me to eat more fruit and veg! haha  
All in all they were all happy with my progress and dont want to see me for a year!
We then we down to see the eye doctor who did the operation on my eyelid and he took a look at the scar of the eyelid and he was happy with how it was healing and there was no need to have a skin graft! and he said he will see me in a years time! Below is a picture of my eye as it still healing


25 March 2013

healing well...

my eye is looking very well it will take some time to heal but its looking good so far as my doc says :)

13 March 2013

slowily healing...

Here is the latest pic of my eyelid after the op 3 weeks on

8 March 2013

2 weedks on...

2 weeks on we travelled back to newcastle again to get the results of how the operation on my eyelid went. well he took off my patch and had a good look at it. he told me he was happy with how it was healing and there was no need for a skin graft! i was happy to hear about that!
the doc put on another pad on my eye just to keep it healing it will slow but it will worth it!

4 March 2013

changing eye patch...



I got the chance to have a look at my eyelid when the nurse changed the eye patch, It wasnt as bad we thought it would be int he first place.
so the nurse cleaned it up and put a new eye patch on and we will wait til friday when we travel back to newcastle to find out if i will need a skin graft. fingers crossed im hoping not!

26 February 2013

removal of brow suspenson...

We traveled to middlesbrough before going to newcastle to drop in on my nana and wish my aunty a happy 50th bday! and see my counins and 2nd cuz baby evie she gets cuter every time i see her!

After saying goodbye to my nana we traveled to newcastle and stopped over at premier inn to be there early the next day.  We got there at 10am to see the eye doc Patrick and the plastic surgeon to discuss what they would be doing basically the plan was to get rid as  much as possible of the brow suspenson as possible as it was causing constant cysts on my eyelid and get rid of the cyst that was already there.

 we then had  had a brief update on how i was doing mito wise with Victoria Nesbitt she was happy with my progress so far.

Then come 4pm it was time for the operation and dad came down with me to hold my hand as i hate having needles done  and my mum is terried of them! It's always the first needle that stings then its completely painless!

Patrick same to see us after the op and they told us that they managed to get all of the sillicone out he also said that the cyst burst and left a hole the size of a 1p so he had to stretch the eyelid and stitch it to my cheek to give it chance to make enough new skin to cover the hole and  and patched me up and i havet o keep it on for 2 weeks

if the skin hasnt made enough new skin they will give me a skin graft but hoping not!

At least the padding is painless!

10 January 2013

owww...

dunno why but mum decided it was time to squeeze the cyst yesterday and it killed!!! it was painful for the rest of the night it has made me a bit nervous about the opearation now with him touching it :S just gotta hope the local will keep the pain away!

6 January 2013

cyst update...

I had a follow up appointment on ~Friday to see the eye doc at local hospital she took one look at it and wanted to operate on it! i said no no no way id rather Newcastle sorted it because they were the ones who know what they are doing with my brow suspension. in the last letter of newcastle it noted that they mah want to operate on it and i would have to stay in at newcastle which i think might happen anyway coz i want rid of this horrible cyst and sort out the posssible allergic relation to the brow suspention. i cant be allerigc though becacuse the right eye is fine and no infection whatso ever so its confusing why i have got it.at least it's not til Febuary!