>> SINGER CELINE DION RECENTLY SHARED SHE HAD BEEN DIAGNOSED WITH A RARE NEUROLOGICAL
CONDITION KNOWN AS STIFF
PERSON SYNDROME. NOW, THIS IS
A VERY RARE DISEASE. ONLY ONE
OR 2 IN A MILLION PEOPLE EVER
FACES DIAGNOSIS. IT IS A
PROGRESSIVE NEUROLOGICAL
DISORDER THAT AFFECTS THE
ENTIRE NERVOUS SYSTEM. JOINING
US TODAY IN STUDIO IS JOY.
CAROL, YOUR SOMEONE WHO HAS
BEEN DIAGNOSED WITH THIS
DISORDER, HE SAID YOU ACTUALLY
WERE DIAGNOSED ABOUT 10 YEARS
AGO. TELL ME ABOUT THAT.
THAT’S RIGHT.
>> ACTUALLY, IT STARTED WHEN I
STARTED FALLING EVERYWHERE. I
THINK I MAY HAVE A LITTLE BIT
DIFFERENT KIND OF STIFF PERSON
SYNDROME. THEN SHE HAS. I WAS
TOLD THAT MY PROGNOSIS MIGHT
BE THAT I’D LIVED FOR 3 YEARS.
AND I’M ON MY 10TH YEAR
BECAUSE OF MAYO CLINIC. SO I
WAS LIVING IN NEW YORK CITY
WHERE NO ONE COULD DIAGNOSE
BE. BUT I I AM SO LUCKY TO BE
HERE IN FLORIDA NEAR MAYO
CLINIC BECAUSE THEY KNOW HOW
TO TREAT ME AND THEY’RE
KEEPING ME ALIVE. AND I’M VERY
HAPPILY LIVING IT 10 YEARS
LATER AFTER MY DIAGNOSIS. SO
TO CELINE, I WISH THE VERY
BEST AND I HOPE SHE IS GREAT.
DOCTORS LIKE I DO HERE IN
FLORIDA. ABSOLUTELY. AND WE’RE
SO HAPPY THAT YOU’RE STILL
HERE AS WELL.
>> BUT TELL ME WHAT LED UP TO
YOUR DIAGNOSIS, WHAT LED YOU
TO SEEK MEDICAL TREATMENT?
WELL, I I WORKED
INTERNATIONALLY FOR ABOUT 35
YEARS AND I WAS KIND OF ENDING
UP THAT TIME. AND I WAS IN
ACTUALLY WAS VISITING SOME
FRIENDS AND GREECE AND I COULD
SWIM VERY WELL IN THE SEA GOOD
SWIMMER. I COULDN’T GET BACK
UP THE HILL BECAUSE MY LEGS
FELT HEAVY. THEY WENT BACK TO
NEW YORK CITY WHERE I LIVE AND
STARTED FALLING EVERYWHERE. I
MEAN, FALLING. STRAIGHT DOWN
10 ON THE FACE ON THE BACK TO
AND SO I WENT TO HER. A DOCTOR
IN NEW YORK AND NO DOCTOR IN
NEW YORK CITY WAS ABLE TO
DIAGNOSE PAY. I WAS
HOSPITALIZED AND FINALLY, ONE
OF MY BRAVE DOCTORS SAID I’M
SENDING YOUR YOUR BLOOD AND
YOUR SPINAL FLUID OFF TO ALL
THOSE GOOD LABORATORIES,
INCLUDING MAYO CLINIC WAS THE
ONLY ONE THAT CAME BACK WITH A
DIAGNOSIS. AND THERE’S A
SPECIALIST HERE IN I’M RIGHT
HERE IN JACKSONVILLE AT MAYO
CLINIC THAT REALLY KNOWS
PLASTICS. THAT’S MY KIND OF
PERSON SYNDROME. AND SO I HAD
NO CHOICE. I COULDN’T WALK
ANYMORE. NOTHING. I COULDN’T
EVEN MOVE MY LIFE. I COULD.
THEN COULDN’T ANYTHING. SO
MINE WAS PRETTY SEVERE. AND I
AM SO LUCKY TO BE ALIVE AND BE
ABLE TO CONTINUE TO LIVE A
VERY FULL LIFE, WHICH I’M
DOING MY 10TH BOOK. TOMORROW
AND CREATE TODAY. I’M
ACTUALLY, IT’S TODAY SUNDAY.
SO I’M PREACHING AND I’M DOING
A LOT OF THINGS IN SPITE OF
THE FACT THAT I HAVE. PARA NEW
PLASTIC SYNDROME.
>> WELL, WHAT I WANT TO HEAR
ALL ABOUT YOUR BOOKS. BUT
FIRST, I’M CURIOUS, WHAT DOES
TREATMENT LOOK LIKE? WHAT
YOU’RE PART OF THE CONDITION?
THEY JUST DON’T KNOW WHAT TO
DO. IT’S AN UNKNOWN. NOT VERY
SO RARE. THEY DON’T KNOW
EXACTLY WHAT TO DO IS NOT A
LOT OF RESEARCH ABOUT IT. SO
>> THAT THEY EXPERIMENT. AND
WITH ME, I GET INFUSIONS EVERY
2 MONTHS FROM MAIL PROBABLY
INCLUDE STEROIDS AND SOME OF
THE THINGS AND SOME KIND OF
WONDERFUL COCKTAIL INCLUDES
INTO MY BODY FOR 2 DAYS. SEEMS
TO BE HOLDING MY NEGATIVE
ANTIBODIES VERY LOW LEVEL. SO
I’M NOT DYING. I’M JUST KEEP
GOING. MALES VERY PROUD OF
WHAT I’VE DONE. AND THEY’RE
ACTUALLY I THINK HE’S FOR
TREAT ME AS THEIR POSTER
CHILD. THEY’VE DONE A LOT OF
RESEARCH WITH STUFF AND
THEY’RE ALSO WRITING ABOUT IT.
SO I’M.
>> I’M ALIVE AND WELL. AND I’M
HERE. I’M SO HAPPY TO HEAR
THAT. SO I KNOW THIS CONDITION
HAS AFFECTED YOUR READING OF
IT TO ME A LITTLE BIT ABOUT
THAT. WELL, IT’S MADE ME WANT
TO READ MORE AND TO HELP MORE
PEOPLE HAVE A BETTER LIFE.
>> SO AS I SAID, I’M ON MY
10TH BOOK. MY LAST BOOK, WHICH
WAS 9 LIVES ENJOY, WASN’T JUST
BROUGHT ALONG HERE WITH ME
ABOUT THE DIFFERENT KINDS OF
CLOSE ENCOUNTERS I’VE HAD WITH
DEATH, INCLUDING PLASTICS AND
ROLLED AND ON WRITING A BOOK
WITH MY FRIEND KYLE REESE
WHOSE HEAD OF ONE JACK’S HERE
IN JACKSONVILLE. AND WE’RE
WRITING A BOOK ON
RELATIONSHIPS BETWEEN
DIFFERENT PEOPLE OF DIFFERENT
CULTURES, DIFFERENT FAITHS AND
IT WILL BE AN EXCITING BOOK
AND LOOK FOR IT IN 2023, I’LL
TELL YOU ABOUT THAT. THEN. SO
BUT IT HAS IT’S MADE ME MORE
ALIVE. MY ILLNESS HAS MADE ME
FEEL I WANT TO LIVE EVERY
MOMENT EVERY SECOND ALIVE.