IT'S CALLED "E.P.I."
A CONDITION, UNDER-RECOGNIZED AND UNDER-DIAGNOSED.
WELCOME TO THE FIRST OF OUR THREE-PART BEHIND THE MYSTERY, RARE AND GENETIC DISEASES.
OUR FOCUS TODAY: EXOCRINE PANCREATIC INSUFFICIENCY, OR E.P.I.
TODAY, WE'RE TALKING WITH DR.
BOB ETEMAD, A GASTROENTEROLOGIST FROM LANKENAU MEDICAL CENTER, BASED IN WYNWOOD, PENNSYLVANIA.
AND LATER ON, WE'RE GONNA BE JOINED BY A WOMAN WHO'S BEEN DEALING WITH E.P.I.
SHE'S GONNA SHARE HER VERY SPECIAL STORY, SO FIRST WE JOIN THE DOCTOR.
GOOD MORNING, SIR.
GOOD MORNING.
IT'S A PLEASURE TO BE HERE.
THANK YOU SO MUCH FOR BEING HERE.
THANK YOU VERY MUCH.
YOU KNOW, THIS IS SOMETHING VERY RARE.
I'VE HEARD OF IT.
I'M NOT VERY MUCH AWARE OF IT.
SO TELL ME EXACTLY WHAT E.P.I.
IS.
YEAH.
SO, THE PANCREAS IS AN ORGAN THAT PRODUCES PROTEINS THAT HELP YOU DIGEST YOUR FOOD.
WHEN THE PANCREAS DOESN'T PRODUCE ENOUGH OF THOSE PROTEINS, YOU HAVE EXOCRINE PANCREATIC
INSUFFICIENCY, OR E.P.I.
AND THEN WHAT, WHEN...WHEN YOU JUST TALKED ABOUT WHAT CAUSES IT, WHEN YOU DO GET THAT
E.P.I., WHAT ARE YOU FEELING?
WHAT ARE THE SYMPTOMS?
YES.
SO MOST OFTEN, IT'S DIARRHEA--.
OKAY.
--IT'S GOING TO BE SOME WEIGHT LOSS THAT'S NOT EXPLAINED, AND THOSE ARE PRIMARILY...SOME
ABDOMINAL PAIN CAN COME AS WELL.
SO IT'S REALLY NOT SOMETHING THAT YOU DON'T FEEL BECAUSE SOMETIMES THE SYMPTOMS CAN BE
MINOR.
YOU'RE REALLY NOTICING THAT SOMETHING IS WRONG.
YOU CAN HAVE SUBTLE SYMPTOMS, AND THAT IS WHERE A DOCTOR OFTEN IS GOING TO HELP MAKE
THE DIAGNOSIS, BUT WHEN IT'S BAD, YOU'RE GOING TO HAVE PRETTY OBVIOUS SYMPTOMS.
AND IF YOU HAVE OBVIOUS SYMPTOMS, DOCTOR, WHY IS THIS SO OFTEN, LET'S SAY, OVERLOOKED
OR UNDERDIAGNOSED?
BECAUSE IT IS RARE.
IT IS.
BECAUSE THE SYMPTOMS MIMIC A LOT OF OTHER THINGS.
FOR EXAMPLE, WEIGHT LOSS.
PEOPLE MIGHT THINK THEIR WEIGHT LOSS IS RELATED TO MAYBE A CHANGE IN THEIR DIET OR IT MAY
BE RELATED TO A CHANGE IN THEIR ACTIVITY.
SOME PEOPLE HAVE CHANGES IN THEIR BOWEL MOVEMENTS AND THEY THINK WELL, I'M HAVING A LITTLE TROUBLE
HERE AND IT GOES AWAY AND COMES BACK AGAIN, SO THE SYMPTOMS ARE NOT SPECIFIC.
AND WHEN IT COMES TO THE NUMBERS, AND I'M NOT SURE YOU HAVE THE DATA ON THIS, BUT IS
IT ONE OUT OF TEN PEOPLE?
HOW COMMON IS THIS?
THAT'S A GREAT QUESTION.
SO RIGHT NOW, WE THINK THAT IT'S PROBABLY SOMEWHERE AROUND 23 PER 100,000 PEOPLE HAVE
OBVIOUS CHRONIC PANCREATITIS, WHICH IS A PROBLEM WHERE THE PANCREAS IS SORT OF SCARRED DOWN.
BUT THE ACTUAL NUMBERS OF WHO HAS E.P.I.
IS REALLY NOT KNOWN BECAUSE WE DON'T REALLY TEST THAT MANY PEOPLE REGULARLY FOR E.P.I.
BUT BEFORE I TOSS TO BREAK--AND I ALWAYS LIKE TO END ON A HIGH NOTE--THERE IS SOME HOPE
OUT THERE FOR PATIENTS THAT ARE SUFFERING FROM THIS, RIGHT?
THERE'S HOPE, BOTH FOR DIAGNOSIS AND FOR TREATMENT.
(MUSIC).
EXCELLENT.
SO STAY RIGHT THERE, DOCTOR, BECAUSE WE'RE GONNA TALK ABOUT THAT HOPE.
WE'RE ALSO GONNA TALK TO A VERY SPECIAL WOMAN WHO HAS BEEN SUFFERING FROM E.P.I.
SHE'S A PATIENT WHO'S GONNA SHARE HER STORY
SO
DON'T GO AWAY.
THERE'S MUCH MORE
TO COME.
STAY
RIGHT THERE.