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Rare Disease Day… March 1, 2010

Posted by loz121 in Uncategorized.
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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.

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