28 July 1997

Apparent patient location: USA

MY SON WAS BORN WITH DUCHENNE'S MUSCULAR DYSTROPHY. I AM NOT A GENETIC CARRIER. I AM ALLERGIC TO MANY HEAVY METAL AND HAVE HAD MERCURY FILLINGS IN MY MOUTH FOR OVER 18YEARS. FOR THE PAST TWO YEARS I HAVE BEEN IN UNBEARABLE PAIN AND CHRONICALLY SICK. I'VE HAD ALL KINDS OF BLOOD- WORK EXCEPT THE ONE THAT I KEEP ON INSISTING ON - MERCURY AND HEAVY METAL TESTS. I READ IN A COUPLE OF BOOKS ON MERCURY TOXICITY THAT MERCURY CAN CHANGE A PERSON'S DNA AND THAT IN SOME COUNTRIES MERCURY IS BANNED OR PATIENTS WHO ARE PREGNANT ARE WARNED ABOUT BIRTH DEFECTSTHAT ARE CAUSED BY THE PASSING THROUGH THE PLACENTA TO THE NEW BORN. I AM WONDERING IF MY SON COULD HAVE DMD BECAUSE OF MERCURY. ALSO IF A MOTHER DOESN'T CARRY THE GENE CAN THERE BE A DIFFERENT IN THE DEGREE OF THE DMD ILLNESS-EX.IN MY SON'S CASE HE IS STILL PRETTY STRONG AND GETS AROUND PRETTY WELL. HE WEARS LEG BRACES AT NIGHT. BUT MOST OF THE KIDS AT MDA CAMP WHO ARE ABOUT THE SAME AGE ARE IN WHEELCHAIRS. IS EACH DMD CASE INDIVIDUAL WITH DELETIONS IN DIFFERENT PARTS OF THE GENE -DIFFERENT DELETIONS OF CERTAIN PROTEINS ETC. OR IS DUCHENNE'S THE SAME NO MATTER WHAT THE CASE. ALSO WHO CAN I WRITE TO ABOUT GETTING MY SON IN TO A RESEARCH STUDY? I WANT TO KNOW EXACTLY WHAT CAN BE DONE FOR MY SON AND I FEEL LIKE IF THEY WOULD AT LEAST PUT HIM IN A STUDY WITH OTHER KIDS WITH DMD-- MAYBE I COULD DEAL WITH THE SITUATION A LOT BETTER. I CAN'T JUST SIT AROUND AND WATCH MY SON LOSE THE USE OF HIS BODY IF THERE WAS A CHANCE THAT THERE IS SOMEONE OUT THERE TRYING SOMETHING. IF ANYBODY CAN TELL ME HOW TO GET IN TOUCH WITH THE NIMH\NIH I WOULD VOLUNTEER MY TIME WITH ONE OF THE RESEARCHERS TO TRY TO FIND THE LITTLE NEEDLE IN THE HAYSTACK. I KNOW DMD IS COMPLICATED BUT I AM GOOD AT FINDING THINGS THAT OTHERS HAVEN'T BEEN ABLE TO DO.