Mitochondrial Cytopathy is the disease that took our beautiful Melissa.
Adults do get the disease and in Melissa's case she did not inherit it.
In the most simplest of terms it is a disease that destroys that part of the cell which produces energy. A body cannot function without energy.
It is a rare disease. In my humble opinion it is only rare because doctors either do not know about it or do not look for it.
Melissa was seen by the "best of the best" in our area and yet they could not diagnose her and refused to send her to Mayo Clinic. Melissa's husband found a doctor who would refer her to Mayo Clinic and that is where she received her diagnosis.
Since Melissa's passing I have found 48 individuals in our area who have been diagnosed. I have learned there are 14 Mitochondrial Chapters throughout the U.S., one of them is local, and 20 Chapters are in formation.
So to those who say "I want to know what is wrong with me, my doctor is not listening to me, my doctor does not know what is wrong with me", my question remains. Do you REALLY want to know?
http://www.umdf.org/
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2 comments:
mom, i clicked on the web page you have available at the end of your post...jack black did a benefit for this rare disease in san diego just this past june...my kids and i love the movie he stared in called "school of rock" we actually own that movie. have you seen it? or heard of that movie? Just think thats really neat, and something i didn't know....interesting things at that web page. i have been there before and thanks for sending me back...love ya!
thanks for the positive comment you left on my blog! I appreciate it:)
God Bless from Arkansas,
Shelley
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