QUESTION OR COMMENT

August 13, 2002

HI-(AGAIN)

I'VE QUIETLY READ EVERYONE'S E-MAILS TO EACH OTHER AND HAVE SEEN HOW

EVERYONE SUPPORTS EACH OTHER..I HAD E-MAILED A FEW MONTHS AGO ABOUT MY

DAUGHTER PAIGE WHO HAS PAUCI JRA(SHE WAS DIAGNOSED AT 14 MOS) SHE IS NOW 19

MOS OLD AND I DON'T THINK WE'VE HAD ANY IMPROVEMENT AND I FEEL SO

FRUSTRATED--I GUESS I JUST NEED TO KNOW THAT OTHER PEOPLE HAVE BEEN DOWN

THIS ROAD..SHE HAS BEEN THRU AN INJECTION WHERE SHE WAS PUT TO SLEEP FOR A

WHILE AS THEY DRAINED AND INJECTED HER KNEE.SHE HAS BEEN THRU PT FOR MONTHS

(THEY HAVE SINCE GIVEN UP SAYING THERE IS NO MORE THEY CAN DO FOR HER.)SHE

HAS BEEN THRU 2 TYPES OF MEDS AND NOW IS ON INDOCIN 2X A DAY..BUT MY PROBLEM

IS THIS NOTHING HAS WORKED..THE INJECTION WAS A MIRACLE (FOR 1 LOUSY MONTH)

NOT EVEN ENOUGH TIME TO STRAIGHTEN OUT HER LEG..BUT NOW AS EVERY ONE PUTS IT

THE UNWANTED ROTTEN HOUSGUEST IS BACK IN FULL FORCE..SHE IS STIFF

LEGGED..SHE BARELY BENDS ANYMORE AND WHEN I TRY TO UNLOCK IT FROM THIS

POSITION SHE CRIES IN PAIN..MY HEART IS BROKEN..THE RHEUMY SAYS WE NEED TO

TRY SULFASALIZINE IF THIS DOESN'T WORK..WHICH IT'S NOT. DOES ANYONE KNOW

ABOUT THIS? WHAT CAN I DO FOR HER? ISN'T THERE A MIRACLE CURE SOMEWHERE? I'M

SO MAD THAT THIS IS HAPPENING TO MY BABY...I'M SORRY TO VENT LIKE THIS..BUT

SOMETIMES YOU JUST DON'T KNOW WHERE TO TURN..NO ONE I KNOW EVEN HAS REMOTELY

HEARD OF THIS DISEASE..I FEEL LIKE I HAVE TO EXPLAIN IT ALL THE TIME WHICH I

SWEAR MAKES ME ANGRIER EACH TIME SOMEONE SAYS WHAT CAN THEY DO FOR IT?? AND

JAY IF YOU SEE THIS AND YOU NEED HELP WITH THE ADVOCACY LET ME KNOW..SOMEONE

NEEDS TO GET THIS DISEASE OUT THERE AND RECOGNIZED THAT WE CAN DO SOMETHING

FOR THESE INNOCENT ANGELS.

THANKS FOR LISTENING

MAUREEN (MOM TO PAIGE 19 MOS PAUCI JRA)

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