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

1 March 2010

Rare Disease Day...

One of my cochlear implanted friends, Vivie came across a blog that alerted her about rare disease day. which is 28th Feb. She told me about it since I have a rare disease too. Mitochondrial disease isn't necessarily rare but Multiple mitochondrial conditions are such as my condition Multiple Mitochondrial DNA deletions is rare and even rarer in my people my age. It switched off my hearing at the age of 8, I've never been able to move my eyeballs to look up, I have droopy eyelids and affects my swallowing resulting in using a button PEG. I may be able to eat some foods normally but I rely on the PEG to keep my weight up. It affects all my muscles by not giving them enough energy so I get tired more easily. Doctors aren't really sure how my Mitochondrial disease works therefore I go yearly tests such as blood tests and ECGs at Newcastle to monitor how it progresses as I get older.
Post a Comment