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Monday, March 12, 2012

2nd LETTER TO PRESIDENT OF THE UNITED STATES BARACK OBAMA continued...

GOD GRANT ME THE SERENITY TO ACCEPT THE THINGS I CANNOT CHANGE, THE COURAGE TO CHANGE THE THINGS I CAN AND THE WISDOM TO KNOW THE DIFFERENCE ...


                                                                        PLEASE!!!!


i came onto twitter and then started this blog to try to raise awareness of MOYAMOYA DISEASE in hopes that others would not go through the same things i have for almost twenty years. especially infants and children. http://www.mendeley.com/research/moyamoya-disease-early-infancy-case-report-literature-review/#page-1  one of the authors of this paper,OSAMA O ZAIDAT is my neurology specialist at THE WISCONSIN MEDICAL COLLEGE AND FROEDTERT HOSPITAL MILWAUKEE.


i am at least forth generation of strokes and brain aneurysms and there is no way of knowing if any of those before me had  MOYAMOYA DISEASE. from 1993 to 2008 i was misdiagnosed.


there was not much information about MOYAMOYA when i was diagnosed, then in april of 2009 that started to change when medical researchers in texas found a single gene defect http://www.health.am/ab/more/single-gene-defect-can-lead-to-stroke/  http://www.bio-medicine.org/biology-news-1/Single-gene-defect-can-cause-stroke--other-artery-diseases-8267-1/

since that time (to the best of MY knowledge) researchers have found 2 more genes associated with MOYAMOYA and several other diseases sometimes associated with MOYAMOYA  http://emedicine.medscape.com/article/1180952-overview#aw2aab6b2b2aa  http://www.mendeley.com/research/seckel-syndrome-and-moyamoya/  http://www.ncbi.nlm.nih.gov/pubmed/20358609  http://www.pr-inside.com/print813606.htm  http://content.karger.com/produktedb/produkte.asp?typ=fulltext&file=000204907  http://www.brain-aneurysm.com/mmd.html

I DO NOT UNDERSTAND HOW STATISTICS CAN MEASURE WHICH DISEASES ARE RARE WHEN THE MAJORITY OF DOCTORS HAVE NEVER HEARD OF THEM AND THEREFORE NOT BEING QUALIFIED TO TEST FOR, TREAT OR EVEN RECOGNIZE THESE DISEASES !!!!!!!!


ALSO ALL PATIENTS OF  THESE 7,000 (  http://rareproject.org/RARElist/  ) RARE DISEASES COLLECTIVELY ADDS UP  TO A LARGE GROUP OF VOTERS!!!!!


please feel free to send a comment anytime,i would appreciate your  opinions!!!!!! ;)

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