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>> I'VE BEEN TREATED AT CHOP — BEFORE I TRANSITIONED —
FOR ABOUT 17 YEARS.
I WAS 5 YEARS OLD WHEN I RECEIVED MY DIAGNOSIS
OF CROHN'S DISEASE.
I MEAN, IT'S BEEN SUCH A BIG PART OF MY LIFE,
IT'S ALMOST LIKE A FAMILY MEMBER.
WHEN SOMEONE BROUGHT UP THE IDEA OF LEAVING CHOP,
IT WASN'T TOO MUCH OF A SURPRISE BECAUSE I'VE —
I KIND OF GREW INTO IT.
I KNEW AT SOME POINT THAT I WAS GOING TO BE LEAVING
INTO MY TEENAGE YEARS.
I MEAN, YOU WANT THAT INDEPENDENCE,
AND YOU NEED TO MOVE ON TO THE NEXT STEP IN YOUR LIFE.
>> AS FAR AS SARAH LEAVING CHOP TO BE TREATED SOMEWHERE
ELSE AND BY OTHER DOCTORS, I THINK THAT EVERY PARENT,
AS WELL AS US — WE HAD A FEAR.
WE KNEW IT WOULD COME ALONG SOONER OR LATER.
BUT I THINK THAT THE SOONER THAT WE RECOGNIZED THAT
AND THE SOONER THAT WE HAD HER INVOLVED IN THAT,
IT WOULD BE LESS STRESSFUL FOR US AS A WHOLE.
>> IT'S OBVIOUSLY GOOD TO BE PREPARED SO THAT THE ANXIETY
ASSOCIATED WITH A CHANGE IN THE PHYSICIAN,
A CHANGE IN THE NURSE, CHANGE IN THE ENVIRONMENT,
IS ALLEVIATED, IF NOT ELIMINATED.
>> WE'VE RECOGNIZED THAT WE REALLY NEED TO START TALKING
ABOUT THIS AT AN EARLIER AND EARLIER AGE,
SO WE'RE EXPANDING IT EVEN MORE AND STARTING TO TALK
WITH FAMILIES ABOUT IT 2 AND EVEN 3 YEARS
BEFORE THEY ACTUALLY ARE READY TO TRANSITION.
>> THEY'RE NOT JUST LIKE, "HERE'S YOUR PAPERS,
HERE'S YOUR FILE, SEE YOU LATER."
THEY HELP YOU OUT WITH FINDING A DOCTOR,
WITH KNOWING ALL THAT INFORMATION YOU HAVE TO KNOW
TO MOVE ON, AND GIVING YOU TIME TO DO THAT.
>> YOU KNOW IN YOUR BRAIN THAT THEY HAVE TO MOVE ON,
BUT YOU KNOW IN YOUR HEART THAT THEY ARE LIKE YOUR
CHILDREN, SO YOU DON'T WANT THEM TO GROW UP AND MOVE ON.