Rare Diseases Community
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This patient support community is for discussions relating to rare diseases and disorders. Some example include: Aarskog syndrome, Acoustic Neuroma, Angelman Syndrome, Behcet Syndrome, Bell’s Palsy, Canavan Disease, Carbon Baby Syndrome, Charcot Marie Tooth Disease, Chromosome Monosomy Disorders, Chromosome Trisomy Disorders, Devic's Disease, Dystonia, Ewing’s Sarcoma, Fragile X Syndrome, Immune Thrombocytopenia, Kawasaki Syndrome,Maple Syrup Urine Disease, Mastocytosis, McCune Albright syndrome, Pachygyria, Polycystic Kidney Disease, Prader-Willi Syndrome, Reiter’s Syndrome, Sickle cell anemia, Sturge-Weber syndrome, Trisomy Disorders, Usher Syndrome, Xanthinuria, Zollinger-Ellison syndrome.

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i was at the doctors yesterday and was told that i have a rare birth defect
he informed me that i was born without an opening to the large duct in the pancreas
i have suffered from cancer for the passed 23 yrs in diffrent parts of my body , it seemed to allways return
i have endured 25 surgeries in my life time that has baffled the medical profesion until now.
they have informed me that i have been surviving using only the small duct of the pancreas .
i have endured so much pain through out my life time , my syptoms (symptoms) have included
severe stomach pains
severe constipation
pains in my back under the left shoulder blade
extreme fatigue
numerous bouts of cancer
low blood sugsr
high colesteral
no appetite
and deprestion , now that i have been diagnosed i have realized that they all tie into one another
the dr. that is going to perform the surgry is the only one capable of this
they will do this through a scope down my throat and cut the opening or doore they will then place a stint into the opening,
now the doctor is telling me that although we can cut an opening for the duct i, it is not a solution to the problem
since the duct has not been fuctioning since birth the chances of it functioning properly now is very slim and hopefully they can have it working long enough to do a bipass as they will have to evenually remove the pancreas
i'm affraid that my life expectancy doesnt look gd.
what i am wondering is anyone else out there going through the same thing as me?
or has anyone else known anyone who has been through this
i would greatly appreciate a reply as my surgery is soon approaching
my surgery date is on march 4th 2011
thank you for listening %*)  Zassa
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