WELL IT'S CALLED NON TWENTY FOUR HOUR DISORDER OR NON TWENTY
FOUR, A CHRONIC SACADIUM RHYTHM DISORDER AFFECTING NEARLY
SEVENTY PERCENT OF THOSE LIVING WITH TOTAL BLINDNESS.
AND YET MANY OF THOSE WHO EXPERIENCE THE IMPACT OF NON
TWENTY FOUR DON'T EVEN KNOW WHAT IT IS THEY HAVE.
PEOPLE WITH NON-TWENTY FOUR EXPERIENCE JUST WIDE RANGE OF
SYMPTOMS INCLUDING SLEEP CHALLENGES SUCH AS NIGHTS OF
SLEEPLESSNESS AND DAYS WHERE THEY ARE FIGHTING TO STAY AWAKE
THAT CAN GREATLY IMPACT THEIR LIVES.
TODAY IN OUR ONGOING SERIES BEHIND THE MYSTERY RARE AND
GENETIC DISEASES WE WILL LEARN MORE.
AND JOINING US THIS MORNING IS DR.
HELENE EMSELLEM A BOARD CERTIFIED NEUROLOGIST WITH THE
CENTER FOR SLEEP AND WAKE DISORDERS BASED IN CHEVY CHASE,
MARYLAND.
AND LATER ON WE WILL HEAR THE PERSONAL STORY OF SOMEONE
IMPACTED BY NON TWENTY FOUR DR.
GOOD MORNING.
I AM GOING TO BE HONEST WITH YOU I HAVE NEVER HEARD OF THIS
BEFORE THIS SEGMENT TODAY.
GIVE US AN OVERVIEW OF NON-TWENTY FOUR.
NON-TWENTY FOUR IS A DISORDER THAT AFFECTS PRIMARILY
INDIVIDUALS WHO ARE BLIND WITH NO LIGHT PERCEPTION.
SO LIGHT EVERY MORNING RESETS OUR
OWN INTERNAL BODY CLOCK.
OUR PLANET OPERATES ON TWENTY FOUR HOURS AND WE OPERATE ON A
LITTLE MORE THAN TWENTY FOUR HOURS.
SOMETIMES AS MUCH AS TWENTY FOUR POINT FIVE HOURS.
AND EACH MORNING WHEN WE WAKE UP WE GET A LOT OF LIGHT CUE TO OUR
BRAIN THAT SAYS, "PUSH IT BACK A LITTLE BIT."
OTHERWISE WE SLIP FOWARD.
SO PEOPLE WHO HAVE NON TWENTY FOUR END UP HAVING THE TIMING OF
THEIR MASTER BODY CLOCK SHIFT LATER AND LATER THROUGH THE
TWENTY FOUR HOUR CLOCK.
AND THEY END UP WITH TIMES WHERE THEIR BODY IS SAYING IT IS TIME
TO GO TO SLEEP AT EIGHT O CLOCK IN THE MORNING WHEN THEY ARE
SUPPOSED TO BE WAKING UP FOR THEIR WORK DAY.
AND GREAT CHALLENGES BOTH IN TERMS OF SLEEPING AND STAYING
AWAKE AT THE RIGHT TIME.
YOU KNOW I CAN IMAGINE PEOPLE WITH NON TWENTY FOUR COULD
PROBABLY OFTEN BE MISDIAGNOSED WITH HAVING A SLEEP DISORDER OR
MAYBE EVEN A MOOD DISORDER RIGHT?
EXACTLY.
IF YOU ARE HAVING TROUBLE FALLING ASLEEP AT THE RIGHT TIME
I THINK MOST DOCTORS ARE GOING TO THINK YOU HAVE INSOMNIA AND
MOST PEOPLE ARE GOING TO THINK THEY HAVE INSOMNIA.
UNFORTUNATELY IF YOU DON'T RECOGNIZE THIS IS A PROBLEM WITH
THE UNDERLYING MASTER CLOCK TREATMENTS FOR INSOMNIA SIMPLY
DO NOT WORK.
HOW WOULD SOMEONE EVEN RECOGNIZE THAT THEY HAVE NON TWENTY FOUR?
FIRST, IF YOU ARE NOT SIGHTED IF YOU ARE BLIND AND PARTICULARLY
IF YOU DO NOT HAVE ANY LIGHT PERCEPTION IT IS SOMETHING TO
THINK ABOUT IF YOU HAVE EXPERIENCED EPISODES OF
DIFFICULTY SLEEPING.
AND EQUALLY IMPORTANT EPISODES OF STAYING AWAKE AT THE RIGHT
TIME.
SINCE THE PROBLEM WILL CYCLE THERE WILL BE PERIODS OF TIME
WHERE SOMEONE WITH NON TWENTY FOUR IS ACTUALLY ALIGNED TO THE
DAY NIGHT CYCLE...
MHM.
...AND TIMES WHEN THEY SHIFT OUT OF ALIGNMENT WITH THE DAY NIGHT
CYCLE.
SO IF YOU ARE HAVING CHRONIC PROBLEMS SOMETIMES FALLING
ASLEEP SOMETIMES STAYING AWAKE.
ALWAYS FEELING TIRED BECAUSE YOU NEVER GET THE RIGHT AMOUNT OF
REST AT THE RIGHT TIME IT IS
CERTAINLY WELL WORTH THINKING ABOUT.
WELL I WANT YOU TO STAY WITH US BECAUSE WHEN WE COME BACK WE
WILL BE JOINED BY A VERY SPECIAL PERSON SHARING HIS OWN NON
TWENTY FOUR HOUR DISORDER STORY SO STAY RIGHT WHERE YOU ARE
DON'T GO AWAY.
(MUSIC).
(COMMERCIAL BREAK).
(MUSIC).
WELCOME BACK TO OUR SPECIAL BEHIND THE MYSTERY RARE AND
GENETIC DISEASES.
WE HAVE BEEN SPEAKING WITH DR.
HELENE IBSALIN SLEEP EXPERT BASED IN CHEVY CHASE, MARYLAND.
WE ARE NOW JOINED BY ANTHONY CISNEROS WHO IS NOW LIVING AND
COPING WITH NON TWENTY FOUR.
WELCOME AND THANKS SO MUCH FOR COMING BY TODAY.
THANK YOU FOR HAVING ME.
SO ANTHONY TELL US ABOUT YOUR BLINDNESS AND HOW NON TWENTY
FOUR IMPACTS YOUR DAILY LIFE.
I BECAME TOTALLY BLIND AS A RESULT OF A HORRIBLE ACCIDENT.
I HAD GROWN UP WITH AN EYE CONDITION THAT IMPAIRED SOME OF
MY VISION, BUT IN SEPTEMBER OF 2005 I WAS INVOLVED IN THE
ACCIDENT.
I WAS HIT BY AN ON COMING COMMUTER TRAIN.
IT TOOK SEVERAL YEARS BEFORE THE DAMAGE SET IN.
FIVE YEARS LATER THE RETNA DETACHED AND THAT IS WHEN I LOST
ALL VISION.
LIGHT PERCEPTION EVERYTHING.
AND NOT LONG AFTER I WENT BLIND I FOUND MYSELF WAKING UP EARLY
IN THE MORNING.
I HAD ALWAYS BEEN A MORNING PERSON, BUT NOW I WAS UP AT TWO
O CLOCK IN THE MORNING IN THE BACKYARD PULLING WEEDS WHEN
EVERYONE ELSE WAS STILL SLEEPING.
AND AS THE DAYS DRAGGED ON MY ENERGIES WERE DEPLETED.
I OFTEN TIMES FELT LIKE A BALOON THAT WAS JUST RAPIDLY LOSING AIR
AND NO MATTER WHAT I WAS DOING WORKING ON A CLIENTS, WAITING
FOR THE BUS, PLAYING WITH MY KIDS, I WOULD JUST FALL ASLEEP
LIKE THAT.
AS IF A SWITCH WAS FLIPPED SO IT WAS VERY FRUSTRATING.
HOW DO YOU THEN KNOW THAT SOMETHING MORE SERIOUS THAT IT
IS IN FACT NON TWENTY FOUR?
I FIRST FOUND OUT ABOUT NON TWENTY FOUR BY A COUNSELOR THAT
I WAS WORKING WITH.
BEING VISUALLY IMPAIRED HERSELF SHE HAD A WEALTH OF RESOURCES
AND SHE RECOGNIZED THE SYMPTOMS...
MHM.
...AND SO SHE EMAILED ME SOME LITERATURE ON THIS SUBJECT AND
EVERYTHING THAT I LEARNED THE INFORMATION IT ALL JUST SEEMED
TO FIT.
IT WAS CLICKING.
YES.
YEAH.
IT WAS DESCRIBING ME AND EVERYTHING I WAS GOING THROUGH.
SO THAT WAS VERY VALIDATING AND FOR THE FIRST TIME PERHAPS FOR
THE FIRST TIME SINCE I LOST MY SIGHT, I FELT A SENSE OF HOPE.
WHAT SHOULD SOMEONE DO IF THEY SUSPECT OR THINK THEY HAVE THIS
CONDITION?
FIRST AND FOREMOST GO TO THEIR HEALTH CARE PROVIDER TALK TO
THEM ABOUT IT, BUT IT MAY BE EXTREMELY IMPORTANT TO GET
ONLINE AND GO TO RESOURCES AND GO TO YOUR DOCTOR WITH
INFORMATION ABOUT WHAT THIS MIGHT BE.
EVEN AMONG THE SLEEP COMMUNITY UNDERSTANDING OF NON TWENTY FOUR
IS NOT GREAT AND THERE ISN'T A HUGE WEALTH OF INFORMATION AND
YOUR AVERAGE PRIMARY CARE DOC MAY NOT KNOW ABOUT IT.
SO IN ORDER TO GET YOU TO THE RIGHT HELP GO ARMED WITH
INFORMATION.
HOW HAS YOUR LIFE CHANGED SINCE THE DISCOVERY SINCE YOU NOW HAVE
A NAME TO WHAT IT IS...
YES.
...YOU ARE EXPERIENCING?
YES IT WAS VERY VALIDATING TO PUT A NAME TO THIS AND IT'S
BETTER NOW.
YOU BEFORE NOW I WAS CRANKY, TIRED ALL THE TIME FALLING
ASLEEP ON CLIENTS, MY KIDS, MY WIFE, BUT NOW WE HAVE A WAY WE
HAVE A NAME AND A WAY TO COPE WITH IT.
HOW MANY KIDS DO YOU HAVE?
I HAVE THREE AND ONE ON THE WAY.
CONGRATULATIONS.
YES THANK YOU.
JUST A BEAUTIFUL MAN.
THANK YOU DOCTOR SO MUCH FOR COMING BY...
THANK YOU.
...AND SHARING THIS STORY WITH US AND HOPEFULLY WE HAVE BEEN
ABLE TO ENLIGHTEN OUR AUDIENCE OUT THERE TO NON TWENTY FOUR AS
WELL SO THANKS TO YOU BOTH.
THANK YOU.
AND IF YOU WOULD LIKE TO LEARN MORE ABOUT NON TWENTY FOUR HOUR
DISORDER PLEASE VISIT THE WEBSITE IT'S NON-24.COM AND
VISIT US AS WELL FOR CONTINUING INFORMATION ON THIS TOPIC AT OUR
WEBSITE.
IT'S THE BALANCING ACT DOT COM.
OH AND AS ALWAYS YOU ARE INVITED TO SHARE WITH US ANY OF YOUR
THOUGHTS OR ANY OF YOUR INSIGHTS WE ALWAYS LOVE HEARING FROM YOU
AT FACEBOOK AT THE BALANCINGACTFANS.