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PORPHYRIA

ann

Message 3 of 12 Previous Next



MY BROTHER WAS DIAGNOSED IN AUG 99 WITH PORPHYRIA AND I HAVE NEVER SEEN SOMETHING SO DEVASTATING IN ALL MY LIFE. HE IS 40 Y.O. HAD TO QUIT HIS JOB,FILE FOR DISABILITY BECAUSE OF THE EFFECTS THIS HORRIBLE DISEASE HAS HAD ON HIM. AND JUST TO ADD TO HIS GRIEF,HIS WIFE LEFT HIM AND FILED FOR DIVORCE ON FRIDAY BECAUSE SHE COULD NOT HANDLE THE STRESS OF THIS DISEASE ANYMORE.MY BROTHER CHANGED OVER NIGHT AND NOW LOOKS LIKE A 100 Y.O. MAN.THIS DISEASE HAS CAUSED HIM SEVERE DEPRESSION,NEUROPATHY TO WHERE SOME DAYS HE CAN BARELY WALK.HE HAS NERVOUS TWITCHES THROUGHOUT HIS ENTIRE BODY DAILY,HAS NO ENERGY,SOME VISION CHANGES,NOT TO MENTION HIS STOMACH HURTING EVERY DAY AS IF SOMEONE WAS PUNCHING HIM IN THE STOMACH.HE HAS HAD 2 ROUNDS OF THE ACUTE ABDOMINAL ATTACKS THAT SENT HIM TO THE HOSPITAL FOR A WEEKS STAY.I HAVE NEVER FELT SO HELPLESS IN ALL MY LIFE.I AM SICKENED TO SEE MY BROTHER THIS WAY.AT THE CURRENT TIME HE IS ALSO SUICIDAL SINCE HIS WIFE LEFT HIM.I AM SORRY TO REPORT SUCH BAD NEWS ABOUT THIS DISEASE BUT SO FAR IT HAS BEEN ABSOLUTELY DEVASTATING FOR HIM AND FOR THOSE OF US WHO LOVE HIM.I AM ON THE NET MYSELF SEARCHING DESPERATELY FOR ANY THING THAT I COULD FIND TO MAKE HIM BETTER. GOD BLESS! ANN

 


   
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