LIVING WITH STARGARDTS DISEASEMichele's Story I WAS DIAGNOSED WITH STARGARDTS DISEASE WHEN I WAS 26 YEARS (1997). I HAD AT THAT POINT HEARD OF THE DISEASE ONLY BECAUSE MY OLDER BROTHER WAS DIAGNOSED WITH IT A FEW YEARS PRIOR. I AM TELLING MY STORY IN HOPES THAT I CAN FIND AND BE ABLE TO TALK TO OTHERS WHO ACTUALLY HAVE WHAT I HAVE AND CAN UNDERSTAND WHAT I GO THOUGH. MY BROTHER IS SO UNLIKE MYSELF. HIS VISION IS NOT AS BAD AND HE IS IN COMPLETE DENIAL AND JUST WON'T TALK ABOUT IT. I AM NOW 35 YEARS OLD, MARRIED WITH THREE CHILDREN. I LOST MY LICENSE DUE TO MY SIGHT ABOUT A YEAR AGO, 2004. I HAVE STRUGGLED TREMENDOUSLY WITH THIS. I REALLY THOUGHT I HAD EVERYTHING UNDER CONTROL. I WAS DEALING WITH THE DISEASE I THOUGHT QUITE WELL. IT WASN'T UNTIL I ACTUALLY LOST MY LICENSE THAT I REALIZED THAT MY LIFE WAS NOT GOING TO BE THE SAME. I LOST ALL INDEPENDENCE. I SIT HERE DAY AFTER DAY AFTER DAY. I WAIT FOR SOMEONE TO TELL ME THAT THEY ARE GOING TO PICK ME UP AND TAKE ME "ANYWHERE"! I HAVE NO CHOICE AS TO WHERE AND WHEN I AM GOING OUT. I AM AT THE MERCY OF EVERYONE ELSE. I HATE IT. I WOULD LOVE TO KNOW HOW EVERYONE IS COPING WITH THIS. WHAT DO YOU DO TO BE INDEPENDENT? IS THERE SOMETHING I SHOULD KNOW ABOUT? ANYTHING? I FEEL SO UNPRODUCTIVE. IT HAS BEEN A LONG YEAR AND I JUST WANT TO FIND MY GLITCH WITH THIS AND DO SOMETHING GREAT! YA KNOW? IF ANYONE WOULD LIKE TO EMAIL ME I WOULD LOVE TO HEAR FROM YOU. Snootress@aol.com MICHELE FROM PENNSYLVANIA |