Stories on Curt's Human Disease Website

Name of the Disease: Sickle Cell Anemia

Author: Rose Oyeyemi

Story Submitted May, 1999

AFTER GIVING BIRTH 1992 TO HANDSOME TWIN BOYS (DAVID & DANIEL), I FOUND OUT 4 MONTHS LATER THEY HAD SICKLE CELL ANEMIA. THE CHILDRENS'HOSPITAL OF ILLINOIS SUBSPECIALTY CLINIC (DR. KAY SAVINGS) DID THE TESTING AND IT CAME BACK POSITIVE. WHEN THEY EXPLAINED THIS DISEASE I WAS SHOCKED, BECAUSE THE BOYS APPEARED TO BE HEALTHY. THEN WHEN I HEARD THERE WASN'T A CURE FOR IT I WANTED TO BELIEVE THAT IT WASN'T TRUE. YOU KNOW WHAT THEY SAY ABOUT TWINS DON'T YOU "DOUBLE THE PLEASURE--DOUBLE THE FUN--" SO IN THIS CASE IT CHANGED TO "DOUBLE THE PLEASURE--DOUBLE THE TEDIOUS, LIFE THREATENING JOURNEY AHEAD".

IT IS VERY COMPLICATED! I CAN'T KEEP A JOB. I HAVE RESIGNED FROM TWO JOBS DUE TO THE TWINS BEING IN DAYCARE MORE EXPOSURE TO SEVERAL ILLNESSES. I WISH PUBLIC AID COULD UNDERSTAND THAT IT IS ALMOST IMPOSSIBLE TO KEEP A PERMANENT JOB WITH DOUBLE FATAL ILLNESSES ESPECIALLY WHEN THE BOYS GO IN SHIFT. I WAS MORE AT THE DR. OFFICE THAN AT WORK. MANY WEEKS OF LOST SLEEP BECAUSE COLDS, FEVER, ETC DURATION WERE LONGER BECAUSE OF THE WEAK IMMUNE SYSTEM. NOW PUBLIC AID WANTS TO GET A JOB, BUT IF I DO I WILL FEEL VERY GUILTY OF BEING LESS ATTENTIVE TO A LIFE-THREATENING ILLNESS AND, OF COURSE, I DON'T WANT THIS ON MY CONSCIOUS SO PUBLIC AID ARE GOING TO CUT ME OFF BECAUSE AT THIS TIME I CAN'T WORK 30 HOURS A WEEK AND MANAGE THIS AWESOME RESPONSIBILITY. I HAVE TRIED TO ATTEND SCHOOL TO PICK UP A SKILL TO INCREASE FINANCES. IT WAS THE LAST TWO WEEKS OF THE SEMESTER I COULDN'T TAKE MY FINAL EXAM BECAUSE DANIEL WAS HOSPITALIZED FOR PNEUMONIA, WAS AT HOME FOR THREE DAYS WHEN THE OTHER TWIN, DAVID, WAS HOSPITALIZED WITH PNEUMONIA. SO YOU SEE I WAS LIVING AT THE HOSPITAL FOR ABOUT TWO WEEKS NOT INCLUDING THE GET WELL PERIOD. UNFORTUNATELY, MY INCOMPLETE TURNED INTO A "F" BECAUSE I HAD A HARD TIME RECUPERATING FROM THE STRESS AND COULDN'T FOCUS SOON ENOUGH TO TAKE THE FINALS WITHIN THE TIME FRAME GIVEN. WHICH IS THE PRIORITY--MY 6 YRS OLD TWIN BOYS. I AM SURE GOD WILL WORK OUT SOMETHING AND UNTIL THEN I AM HOLDING ON AND BEING THE BEST, ATTENTIVE MOTHER THAT THESE UNFORTUNATELY TWINS NEED.

ALTHOUGH, THE SYSTEM IS PUSHING ME AGAINST A BRICK WALL TO WORK. I CAN'T SEE STRAINING & STRESSING MYSELF TO SOMEWHAT NEGLECT MY BOYS WHEN NEEDING ME. ONE OF THE TWIN, DANIEL, HAS BEEN DIAGNOSED HAVING A HIGH RISK OF STROKE. EVERY 4 WEEKS BLOOD WORK AND A BLOOD TRANSFUSION IS DONE TO DECREASE THE RISK. THE OTHER TWIN, DAVID, HE GETS BLOOD TRANSFUSION AS NEEDED WHICH DEPENDS ON THE CAREGIVER, ME. INSPITE OF THIS UGLY DISEASE, I HAVE LEARNED TO DEPEND ON GOD AND IMPORTANTLY THANK HIM FOR BLESSING MY TWIN TO HAVE THEIR BODY PARTS & ORGANS---TRULY A BLESSING

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