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CAPTIONS PAID FOR BY DISCOVERY COMMUNICATIONS
Narrator: IT WAS THE SUMMER OF 1955,
AND LINDA CHARLES WAS 5 YEARS OLD.
AS A CHILD, SHE LED A SEEMINGLY ORDINARY LIFE,
DREAMING OF A WORLD OUTSIDE OF THE PHILADELPHIA NEIGHBORHOOD
SHE LIVED IN WITH HER FAMILY.
Linda: I ALWAYS WANTED TO BE, WHWH I WAS A LITTLE GIRL,
A NURSE, A MOVIE STAR, AND IN THE ARMY.
Narrator: IT WOULD APPEAR TO EVERYONE WHO MET LINDA
THAT SHE WAS A HEALTHY LITTLE GIRL,
BUT AS SOON AS SHE WOULD SMILE,
IT WAS CLEAR THAT SOMETHING WAS NOT QUITE RIGHT.
I HAD CAVITIES AND ABSCESSES.
WE DID EVERYTHING -- BRUSHING, FLOSSING --
THAT THE DENTIST SAID TO DO,
BUT FROM THE TIME I CAN REMEMBER,
I SPENT AN INORDINATE AMOUNT OF TIME IN DENTAL CHAIRS,
GETTING FILLING AFTER FILLING.
Narrator: BY THE TIME LINDA TURNS 12, SHE HAS HAD 10 CAVITIES FILLED,
BUT WHILE SHE'S CONCERNED AND FRUSTRATED WITH HER TEETH,
THEY'RE THE LAST THING
HER PARENTS SEEM TO BE WORRIED ABOUT.
THEY'RE TOO BUSY MANAGING THREE CHILDREN
AND STRUGGLING TO MAKE ENDS MEET.
Linda: I THINK THAT THEY WERE UNABLE TO RESPOND TO ME
IN THE WAY THAT I WOULD HAVE WISHED THEY COULD HAVE.
Narrator: THEN, WHEN LINDA ENTERS MIDDLE SCHOOL,
A STRANGE NEW SYMPTOM BEGINS TO EMERGE --
HER MOUTH IS INCESSANTLY DRY,
AND SHE SOON DEVELOPS A VERY STRANGE HABIT.
I COULDN'T EAT WITHOUT DRINKING.
IN FACT, I STARTED DUNKING THINGS.
I MEAN, NOT JUST COOKIES.
BREAD, SANDWICHES, SODA, SOUP, WHATEVER IT WAS --
BECAUSE IT MADE IT EASIER FOR ME TO EAT.
I FELT SEPARATE AND NOT LIKE THE OTHER KIDS.
I SORT OF ISOLATED MYSELF.
WHEN I WOULD GET HOME,
I WOULD ALWAYS HAVE LOTS OF LIBRARY BOOKS,
AND I MADE MYSELF HAPPY BY LIVING THROUGH MY BOOKS.
Narrator: DURING HIGH SCHOOL,
LINDA DOES HER BEST TO COME OUT OF HER SHELL,
BUT AS SHE PUSHES HERSELF TO DO MORE,
SHE NOTICES THAT HER BODY IS HAVING TROUBLE KEEPING UP.
Linda: I WOULD HAVE EXTREME JOINT AND MUSCLE PAIN.
EVERYTHING WAS MORE OF AN EFFORT FOR ME TO DO, EVEN GYM CLASS,
SO I DIDN'T PARTICIPATE
IN A LOT OF THINGS THAT I REALLY WANTED TO,
BECAUSE I FELT SO ISOLATED,
AND I THINK IT MADE ME PRETTY INTROVERTED.
Narrator: BUT WHEN THE AGONIZING PAINS DON'T GO AWAY,
LINDA'S MOTHER FINALLY TAKES HER IN TO SEE THE FAMILY DOCTOR
JUST IN CASE SOMETHING IS REALLY WRONG.
WE WENT TO THE DOCTOR, AND HE SAID, "DON'T WORRY ABOUT IT.
"IT'S JUST GROWING PAINS.
IT'LL GO AWAY WHEN YOU'RE AN ADULT."
I THINK MY PARENTS WERE CONCERNED,
BUT THEIR MIND-SET, BEING FROM THIS DEPRESSION ERA -
TOUGH, HARDY, INDIVIDUAL MENTALITY --
THEY SORT OF WANTED ME TO TOUH IT OUT AND JUST GET THROUGH IT.
Narrator: THROUGH THE REST OF HER HIGH-SCHOOL YEARS,
LINDA DOES THE BEST SHE CAN TO SIMPLY GRIN AND BEAR IT,
AND WHEN HER PARENTS ANNOUNCE THAT THEY ARE GETTING A DIVORCE,
CONCERNS ABOUT HER HEALTH TAKE EVEN MORE OF A BACKSEAT.
I DIDN'T REALLY SEE MUCH OF MY FATHER.
MY MOTHER WAS WORKING FULL-TIME
AND WORRIED ABOUT TAKING CARE OF THREE CHILDREN.
ME NOT FEELING GOOD WAS NEVER A PRIMARY ISSUE.
THERE WASN'T TIME FOR IT.
I FELT LIKE NO ONE WAS ACTUALLY HEARING ME.
Narrator: BY THE TIME SHE GRADUATES FROM HIGH SCHOOL IN 1967,
LINDA HAS BECOCO ACCUSTOMED TO LIVING WITH THE JOINT PAINS
AND SOON AFTER MANAGES TO LAND A FULL-TIME JOB AS A RECEPTIONIST.
IN THE ENSUING YEARS, LINDA MARRIES THE MAN OF HER DREAMS
AND SOON BECOMES PREGNANT.
SHE'S EXCITED ABOUT THE PROSPECT OF BEING A MOM
DESPITE THE TOLL IT WILL TAKE ON HER ALREADY-FRAGILE BODY.
IT WAS 1972 -- JIMI HENDRIX, JANIS JOPLIN --
AND ALONG CAME MY SON.
I NAMED HIM JARED ZACHARY.
JARED WAS BORN JUST ABOUT A YEAR AFTER MY DAUGHTER DINA WAS BORN,
AND WE WERE ACTUALLY, AT THAT TIME, NEXT-DOOR NEIGHBORS.
HAVING CHILDREN AS YOUNG AS WE WERE FOCUSED BOTH OF US.
WE STARTED TO UNDERSTAND THAT,
"LIFE ISN'T ALL ABOUT ME ANYMORE, EVER."
Narrator: A COUPLE OF YEARS AFTER JARED IS BORN,
LINDA'S MARRIAGE ENDS IN DIVORCE.
BUT JUST AS SHE'S SETTLING IN TO LIFE AS A SINGLE MOTHER,
AN ANNOYING NEW SYMPTOM BEGINS TO EMERGE.
Linda: I WAS CONSTANTLY GOING TO EYE DOCTORS.
I HAD SWELLING.
I HAD FOREIGN BODIES IN MY EYES, LIKE THEY'RE GRITTY.
THEY THOUGHT IT WAS ALLERGIES
AND I SHOULD USE THESE ALLERGY DROPS.
Narrator: SHE DILIGENTLY FOLLOWS THE DOCTOR'S ORDERS,
BUT NO MATTER HOW MANY DROPS SHE USES,
THE CHRONIC EYE IRRITATION JUST WON'T GO AWAY.
AND TO MAKE MATTERS WORSE,
SHE SOON STARTS EXPERIENCING YET ANOTHER SYMPTOM --
BOUTS OF CHRONIC FATIGUE
THAT MAKE EVEN THE SIMPLEST DAILY TASKS SEEM IMPOSSIBLE.
THERE WERE TIMES THAT AS MUCH AS I LOVED HIM AND WANTED TO PLAY,
I WAS SO FATIGUED, SO EXHAUSTED,
THAT I JUST DIDN'T FEEL LIKE I COULD FULLY PARTICIPATE,
AND I COULDN'T.
I JUST COULDN'T DO IT.
SHE WAS ALWAYS TIRED --
SOMETHING ALWAYS DRAGGING HER DOWN --
AND SHE DID SEE DOCTOR AFTER DOCTOR,
BLOOD WORK AFTER BLOOD WORK,
BUT THERE WAS NOTHING EVER REALLY DEFINITIVE.
I WAS SEEING LOTS OF DOCTORS,
AND I WASN'T GETTING ANY ANSWERS.
I GOT THE SENSE THAT PEOPLE WERE FEELING I WAS MAKING THINGS UP.
Narrator: WHILE NO DOCTOR CAN IDENTIFY THE CAUSE OF LINDA'S PAIN,
HER LIFE BEGINS TO UNRAVEL PIECE BY PIECE.
I USED TO GET FIRED A LOT,
TRUTHFULLY, BECAUSE IF YOU'RE SICK AND YOU HAVE A NEW JB
AND YOU'RE OUT FOR A DAY OR TWO HERE AND THERE,
THEN A FEW MONTHS, THEYEYAY "BYE."
I ABSOLUTELY HAD A SENSE OF LOSING CONTROL OF MY LIFE,
THAT IT WAS NO LONGER IN MY HANDS.
Narrator: LINDA CHARLES HAS HARDLY KNOWN A DAY IN HER LIFE WITHOUT PAIN.
SOME DAYS HER JOINTS ACHE SO MUCH SHE CAN BARELY WALK.
HER EYES RANDOMLY SWELL,
AND NO DOCTOR HAS BEEN ABLE TO PINPOINT
JUST WHAT'S CAUSING THE BIZARRE
AND SEEMINGLY UNRELATED SYMPTOMS.
BUT WHEN SHE BECAME A SINGLE MOTHER,
LINDA PROMISED HERSELF
THAT DESPITE HER DEBILITATING CONDITION,
SHE WOULD DO WHATEVER IT TAKES TO GIVE HER SON A GOOD LIFE.
YOU SORT OF PUT ASIDE THOSE THINGS THAT YOU THINK ABOUT
OR DREAM ABOUT FOR YOURSELF
IN ORDER TO TAKE CARE OF YOUR CHILD.
Narrator: FOR MORE THAN EIGHT YEARS, LINDA JUGGLES VARIOUS JOBS,
TRYING TO MAKE ENDS MEET,
BUT THEN, WHEN SHE TURNS 30, SHE MAKES A DECISION
THAT CHANGES HER LIFE COMPLETELY
WHEN SHE ENROLLS IN NURSING SCHOOL.
IN SEPTEMBER OF 1981, I FOUND MYMYLF BEING A STUDENT.
Narrator: AFTER TWO YEARS, SHE GRADUATES AND QUICKLY FINDS A JOB.
DRAWING ON HER EXPERIENCES WITH HER OWN ILLNESS,
LINDA POURS HERSELF INTO HER WORK.
SHE HAD A LOT OF EMPATHY FOR HER PATIENTS.
I THINK THAT IT MADE ME A BETTER NURSE.
PEOPLE OFTEN HAD SYMPTOMS THAT WEREN'T VISIBLE,
BUT THEY WERE IN PAIN,
AND I THINK THAT I WAS VERY TUNED IN
TO THEIR EMOTIONAL STATE.
Narrator: LINDA MUMUERS THE STRENGTH EACH DAY TO PUT HER PAIN ASIDE
AND FOCUSES ON CARING FOR HER PATIENTS
AND RAISING HER SON.
WHEN JARED GRADUATES FROM HIGH SCHOOL,
LINDA IS FEELING CONFIDENT ENOUGH ABOUT HER HEALTH
TO TACKLE HER SECOND LIFELONG DREAM.
Linda: I JOINED THE RESERVES OF THE ARMY NURSE COCOS.
Narrator: SHORTLY AFTER ENLISTING IN 1991,
LINDA IS SENT TO AN OFFICER TRAINING CAMP IN TEXAS
WHERE SHE QUICKLY REALIZES JUST HOW STRENUOUS
THE PHYSICAL DEMANDS OF THE ARMY CAN BE.
BUT EACH TIME HER LEGS FEEL LIKE GIVING OUT OR HER EYES ACT UP,
SHE BITES THE BULLET LIKE SHE HAS MANY TIMES BEFORE.
Narrator: LINDA SEEMS TO BE THRIVING IN THE MILITARY,
BUT THEN, WHEN SHE LEAST EXPECTS IT,
A FRIGHTENING NEW SYMPTOM EMERGES.
Linda: THE HEARTBURN WOULD FEEL, LITERALLY,
LIKE MY CHEST WAS GONNA EXPLODE OR IMPLODE,
AND NO MATTER WHAT I TOOK,
OVER-THE-COUNTER MEDICATION DIDN'T SEEM TO HELP THAT.
Narrator: LINDA FEELS HER WORLD BEGIN TO SPIRAL OUT OF CONTROL AGAIN.
SHE IS LOSING WEIGHT LIKE CRAZY, AND EVEN MORE ALARMINGLY,
HER GASTROINTESTINAL ISSUES
SEEM TO BE MAKING HER OTHER SYMPTOMS EVEN WORSE.
DOCTORS PRESCRIBE VARIOUS PAIN-KILLERS,
EYEDROPS, AND ANTACIDS,
BUT FRUSTRATINGLY, NONE OF THEM WORK.
Carol: AT THIS POINT, LINDA WAS BEING TREATED
FOR SO MANY DIFFERENT THINGS.
THERE WAS THE EYES AND THE REFLUX AND T T STIFFNESS.
NOBODY WAS PUTTING IT TOGETHER AS ONE COHESIVE DIAGNOSIS.
Narrator: FINALLY, AFTER TWO YEARS OF SERVICE,
LINDA IS FEELING DEFEATED.
UNABLE TO KEEP UP WITH THE ARMY'S DEMANDS,
SHE MAKES THE EXTREMELY DIFFICULT DECISION
TO LEAVE THE MILITARY.
Carol: SHE REALIZED THAT SHE HAD TO GO OUT THERE
AND FIND THE ANSWERS TO HER OWN HEALTH PROBLEMS.
THE MILITARY WASN'T DOING IT FOR HER.
Narrator: WHEN SHE'S OFFERED A CIVILIAN NURSING JOB
AT THE DEPARTMENT OF PUBLIC HEALTH ON A BASE IN ARIZONA,
LINDA HAPPILY ACCEPTS.
DESPITE THE COMFORT OF A LESS-RIGOROUS SCHEDULE,
LINDA IS STILL BURDENED BY TERRIBLE STOMACHACHES
AND SOON MAKES AN APPOINTMENT WITH THE GASTROENTEROLOGIST
AT HER NEW HOSPITAL.
I WAS EXAMINED FOR GALLSTONES, FOR A GALLBLADDER WORKUP,
BECAUSE I JUST HAD SO O CH PAIN IN THE AREA OF THE GALLBLADDER.
Narrator: FOR THE NEXT THREE DAYS,
LINDA ANXIOUSLY AWAITS THE RESULTS,
PRAYING THAT SHE WILL FINALLY HAVE A SOLID DIAGNOSIS,
BUT WHEN THE FINDINGS COME IN, SHE'S NO CLOSER TO AN ANSWER.
HER GALLBLADDER SEEMS TO BE PERFECTLY FINE,
AND HER DOCTOR CAN'T OFFER ANY ADVICE.
THAT WASN'T VERY REASSURING FOR ME TO HEAR,
BECAUSE I WAS IN PAIN AND I WAS MISERABLE.
Narrator: DEJECTED, LINDA TRIES TO MARSHAL ON LIKE SHE ALWAYS HAS,
BUT THE JOINT PAIN, INTESTINAL DISCOMFORT, AND FATIGUE
ARE BEGINNING TO OVERWHELM HER.
NOW, IT'S TAKING EVERYTHING SHE HAS IN HER
JUST TO GET TO WORK EACH DAY.
SHE WOULD, LIKE, COME HOME, AND SHE WOULD LAY DOWN,
AND SHE WOULD HAVE TO -- I MEAN, SHE WOULD HAVE TO REST.
EVERY TIME I WOULD GO TO EAT,
THE FOOD WOULD ALMOST, LIKE, REGURGITATE ON ME,
LIKE, RIGHT AFTER I ATE IT,
AND I WOULD GET REALLY NAUSEATED
AND HAVE JUST INCREDIBLE BURNING SENSATIONS
IN MY CHEST AND MY THROAT, AND SOMETIMES EVEN IN MY MOUTH.
Narrator: THEN, ONE AFTERNOON IN 1994,
WHILE IN THE THROES OF ANOTHER BOUT OF STOMACH PAIN,
LINDA SHOWS UP AT THE HOSPITAL FOR HER SHIFT,
BUT THE SECOND SHE WALKS IN THE DOOR,
THE RESIDENT E.R. DOCTOR TAKES ONE LOOK AT HER
AND INSISTS ON CHECKING HER OUT.
HE SAID, "YOU LOOK AWFUL.
LET ME TAKE YOUR VITAL SIGNS."
AND I WAS RUNNING A FEVER.
Narrator: AS HE'S EXAMINING HER, LINDA REMINDS HIM
THAT JUST THREE WEEKS EARLIER, ANOTHER DOCTOR SUSPECTED
THAT SHE HAD A PROBLEM WITH HER GALLBLADDER.
THE DOCTOR IMMEDIATELY REVIEWS HER CASE HISTORY
AND MAKES A CRITICAL DECISION.
HE SAID, "I'M ADMITTING YOU, AND I'M TAKING YOUR GALLBLADDER OUT.
I KNOW WE CAN'T FIND ANY STONES, BUT THERE'S SOMETHING GOING ON."
Narrator: THE MEDICAL TEAM RACES TO PREP LINDA FOR SURGERY,
AND IN LESS THAN AN HOUR, SHE'S WHEELED INTO THE OPERATING ROOM.
ONCE THEY'VE REMOVED HER GALLBLADDER,
THEY IMMEDIATELY SEND IT TO THE LAB,
HOPING TO FIND SOME CLUE
AS TO WHAT'S BEEN CAUSING LINDA SO MUCH MISERY.
TWO HOURS LATER, AS LINDA SLOWLY REGAINS CONSCIOUSNES,
SHE NOTICES THAT SOMETHING IS VERY DIFFERENEN
Linda: I IMMEDIATELY FELT BETTER.
I REALLY DID.
I THINK, ACUTELY, IMMEDIATELY, I GOT SOME RELIEF.
I HAD A POST-OPERATIVE VISIT WITH THE SURGEON,
AND HE SAID, "LINDA, I GOT THIS VERY ODD PATHOLOGY REPORT."
Narrator: LINDA IS COMPLETELY SHOCKED
WHEN HE EXPLAINS THAT THE TESTS DETECTED A SMALL HOLE
IN THE BOTTOM OF HER GALLBLADDER.
HE SAID, "LINDA, IT APPEARED
"TO THE PEOPLE DOING THE PATHOLOGY REPORT
"THAT THE BOTTOM OF YOUR GALLBLADDER
"HAD LITERALLY BEEN ERODED BY ACID
"AND THE CONTENTS WERE DRIPPING INTO YOUR STOMACH,
WHICH IS WHY YOU WERE SICK."
Narrator: THE DOCTOR SPECULATES THAT B BE, A HIGHLY-TOXIC ACID,
HAD BEEN ACCUMULATING IN LINDA'S GALLBLADDER
RATHER THAN BEING RELEASED INTO THE INTESTINES TO AID IN DIGESTION.
AS A RESULT,
THE ACID EVENTUALLY ATE THROUGH THE LINING OF HER GALLBLADDER,
CAUSING THE BILE TO LEAK INTO HER ABDOMEN.
THIS, IN TURN, TRIGGERED THE SEARING PAIN SHE FELT
EVERY TIME SHE ATE.
HE HAD NO IDEA WHY ANYTHING LIKE THAT WOULD HAPPEN.
HE HAD NO IDEA WHY.
Narrator: THE SURGEON ASSURES LINDA
THAT WHILE HE HAS NO DEFINITIVE ANSWER AS TO THE CAUSE,
HE DOES EXPECT THAT SHE WILL HAVE A MUCH EASIER TIME
DIGESTING FOOD NOW THAT HER GALLBLADDER HAS BEEN REMOVED.
SURE ENOUGH, LINDA'S STOMACH GIVES HER NO MORE TROUBLE.
UNFORTUNATELY, SHE CONTINUES TO EXPERIENCE JOINT PAIN
AND CHRONICALLY SWOLLEN EYES.
LINDA PUT UP A REALLY GOOD FRONT.
I THINK SHE MASKED A LOT OF HER PAIN.
Narrator: THREE YEARS LATER,
SHE'S FEELING WELL ENOUGH TO VENTURE OUT ON HER OWN AGAIN
AND DECIDES TO MOVE ACROSS THE COUNTRY.
LITTLE DOES SHE KNOW THAT THIS SEEMINGLY ROUTINE TRIP
WOULD SOON TURN INTO A LIVING NIGHTMARE.
Linda: MY BEST FRIEND, CAROL, LIVED IN FLORIDA FOR OVER 20 YEARS,
AND I'D ALWAYS WANTED TO LIVE IN FLORIDA,
AND I THOUGHT, "WHY STOP NOW?"
ON MY WAY THERE, DRIVING FOR THREE DAYS,
MY LEFT EYE STARTED TO HURT.
THE PAIN WAS INCREDIBLE.
I HAD NEVER EXPERIENCED THAT KIND OF PAIN.
I COULDN'T EVEN DESCRIBE IT.
Narrator: MIRACULOUSLY, LINDA COMPLETES THE 1,200-MILE TRIP,
AND AS SOON AS SHE ARRIVE, CAROL TAKES HER TO AN OPTICIAN,
WHO IMMEDIATELY REFERS HER TO A CORNEAL S SCIALIST.
YOU KNOW, HE SAID TO ME, "YOU HAVE A VERY SERIOUS CONDITION.
"YOU HAVE A DENDRITE IN YOUR EYE,
AND YOU COULD LOSE YOUR VISION IN YOUR LEFT EYE."
Narrator: LIKE A COLD D RE,
THE LESION, OR DENDRITE, ON LINDA'S CORNEA
IS CAUSED BY THE *** SIMPLEX VIRUS.
UP TO 95% OF THE ADULT POPULATION
HAS SUFFERED FROM *** SIMPLEX 1
AT SOME POINT IN THEIR LIVES,
BUT VERY RARELY IS THE INFECTION FOUND IN THE CORNEAS.
THE CAUSES ARE UNKNOWN, BUT IT IS TREATABLE.
LINDA IS IMMEDIATELY PUT ON ANTIBIOTICS
AND TOLD SHE CANNOT GO ANYWHERE
WITHOUT WEARING PROTECTIVE GLASSES.
CAROL, AT THIS POINT, WAS DRIVING ME EVERYWHERE.
I COULDN'T WORK.
THE SUN'S OUT ALL THE TIME IN FLORIDA,
SO I WAS BECOMING LIKE A VAMPIRE,
WHERE I COULD ONLY GO OUT AT NIGHT.
SHE WAS VERY, VERY LIGHT SENSITIVE,
TO THE POINT WHERE WE WERE SITTING IN MY HOUSE ONE EVENING,
WATCHING TV,
AND SHE SAID, "CAN YOU PLEASE TURN THE LIGHT OUT?
IT'S BOTHERING MY EYES."
SO, I REACHED UP. I TURNED THE LIGHT OUT.
SHE SAID, "NO, ALL THE LIGHTS."
AND I THINK THAT WAS A PIVOTAL MOMENT FOR ME, TOO.
I THOUGHT, "THERE IS DEFINITELY SOMETHING MORE GOING ON HERE."
Narrator: STRANGELY, AS HER EYES BEGIN HEALING,
THE SYMPTOMS SHE'S BECOME SO USED TO LIVING WITH
SEEM TO BE INTENENFYING.
YOU COULD ACTUALLY SEE HER JOINTS WERE SWOLLEN AT TIMES.
YOU COULD TELL BY THE WAY SHE MOVED THAT IT WAS PAINFUL.
HER EYELIDS WERE HUGE AND VERY RED.
Narrator: SLOWLY, THIS EVER OPTIMISTIC, INDEPENDENT WOMAN
IS SINKING INTO A DEPRESSION SHE NEVER THOUGHT POSSIBLE.
Linda: I WAS THERE IN FLORIDA FOR NINE MONTHS,
SEVEN OF WHICH I LIVED ON A CREDIT CARD,
BECAUSE I WASN'T WORKING,
AND FINALLY, I COULDN'T PAY MY RENT.
NOW I AM A TOTALLY DISENFRANCHISED PERSON
WITH NO JOB, NO MONEY, NO MEDICAL BENEFITS,
AND NO DOCTORS BELIEVING THAT THERE'S ANYTHING WRONG WITH ME.
Narrator: LINDA CHARLES HAS BEEN LIVING
WITH CRIPPLING GASTROINTESTINAL ISSUES,
AGONIZING JOINT PAIN,
AND CHRONICALLY DRY, SWOLLEN EYES FOR MORE THAN 30 YEARS.
AS SHE RECOVERS FROM A SERIES
OF TERRIFYING EYE PROBLEMS THAT ALMOST LEFT HER BLIND,
SHE'S FINDING IT INCREASINGLY DIFFICULT
TO KEEP UP WITH THE DEMANDS OF HER NURSING CAREER,
AND FOR THE FIRST TIME IN HER LIFE,
SHE'S NEARING A BREAKING POINT.
Carol: THE SADDEST THING THAT SHE SAID TO ME WAS,
"YOU KNOW WHEN YOU WANT TO HAVE A REALLY GOOD CRY?"
AND I SAID, "YEAH."
SHE SAID, "WELL, YOU KNOW, I CAN'T CRY ANYMORE.
I HAVE NO TEARS."
IT WAS THE MOST DEPRESSING TIME OF MY LIFE --
FEELING LIKE I HAD A HEAVY, BLACK CLOAK
THAT I WAS DRAGGING AROUND WITH ME,
BECAUSE THE DEPRESSION WAS THAT DISABLING.
Narrator: LINDA'S EYES HAVE BECOME SO LIGHT SENSITIVE
THAT SHE CAN'T LEAVE THE HOUSE,
AND SINCE HER MOVE TO FLORIDA NINE MONTHS EARLIER,
SHE'S USED UP ALL OF HER SAVINGS.
OVERWHELMED, HER ONLY OPTION LEFT
IS TO MOVE BACK TO HER HOMETOWN OF PHILADELPHIA
AND PRAY THAT A FRESH START WILL DO HER SOME GOOD,
BUT WHEN SHE VISITS HER DOCTORS BACK HOME,
THEY CAN'T SEEM TO FIND ANYTHING WRONG WITH HER AT ALL.
I WAS BASICALLY DISMISSED BY THEM
AS NEEDING PSYCHOTHERAPY, HORMONES,
THAT I WAS A HYPOCHONDRIAC.
YOU KNOW, I JUST NEEDED TO GO BE REFERRED TO THE PSYCH DEPARTMENT
FOR THERAPY.
Narrator: FED UP,
LINDA DECIDES TO TAKE THINGS INTO HER OWN HANDS
AND BEGINS FRANTICALLY RESEARCHING MEDICAL CENTERS
IN THE PHILADELPHIA AREA.
ULTIMATELY, SHE COMES ACROSS WILLS EYE HOSPITAL
AND MAKES AN APPOINTMENT WITH OPHTHALMOLOGIST PETER LAIBSON.
WHEN I FIRST SAW HER, LINDA HAD JOINT PAINS,
SOME DENTAL PROBLEMS,
AND LINDA HAD SOME G.I. . OBLEMS.
ALL OF THESE THINGS COMBINED MADE ME THINK
THAT THIS MIGHT BE SOMETHING MORE THAN JUST DRY EYES.
Narrator: AFTER PERFORMING A THOROUGH EXAM,
DR. LAIBSON IS CONVINCED
THAT THERE'S MORE GOING ON THAN MEETS THE EYE.
WORKING ON A HUNCH,
HE DECIDES TO RUN A FEFEMORE TARGETED TESTS ON LINDA.
FIRST, HE MEASURES THE FUNCTION OF LINDA'S TEAR FILM,
THE LUBRICATING, PROTECTIVE LAYER ON THE SURFACE OF THE EYE.
WE HAVE THE PATIENT BLINK AND OPEN THEIR EYE.
WHEN THEY BLINK AND OPEN THEIR EYE,
THE TEAR FILM IS SPREAD ACROSS THE SURFACE OF THE CORNEA.
THE TEAR-FILM BREAKUP TIME IS NORMALLY 10 SECONDS.
IF THE TEAR FILM IS UNSTABLE,
IT IS MAYBE 1 OR 2 OR 3 SECONDS IN A PATIENT WHO HAS DRY EYES.
Narrator: JUST AS DR. LAIBSON SUSPECTED,
LINDA'S TEAR-FILM BREAKUP IS CLOCKING IN AT ONLY 2 SECONDS.
NEXT, HE PERFORMS A TEST
TO SEE HOW WELL HER ACTUAL TEAR DUCTS ARE WORKING.
WE MEASURE THE PRODUCTION OF TEARS OVER A 5-MINUTE PERIOD.
WE PUT A SMALL FILTER-PAPER STRIP INTO THE LOWER LID
AND HAVE THE PATIENT CLOSE THEIR EYES FOR A 5-MINUTE PERIOD,
AND WE CAN MEASURE THE AMOUNT OF WETTING OF THE STRIP
IN THIS PERIOD.
PATIENTS WHO HAVE TEAR-FILM WETTING UNDER 5 MILLIMETERS
ARE SUSPICIOUS.
LINDA'S STRIP MEASURED, I THINK, 1 OR 2 MILLIMETERS,
AND LINDA'S TEAR PRODUCTION WAS DEFINITELY ABNORMAL.
Narrator: BUT DR. LAIBSON CANNOT GUARANTEE A DIAGNOSIS
UNTIL LINDA UNDERGOES ONE MORE SEEMINGLY UNRELATED TEST --
A LIP BIOPSY.
A LIP BIOPSY IS DONE
BY ANESTHETIZING THE AREA TO BE BIOPSIED,
AND THEN A SMALL SNIP OF TISSUE IS TAKEN OUT.
THERE ARE A LOT OF NERVES RIGHT HERE.
I CAN STILL POINT TO THAT SPOT.
IT WAS INCREDIBLY PAINFUL.
Narrator: NOW THE ONLY THING THEY CAN DO IS WAIT FOR THE LAB RESULTS.
WELL, THERE WAS THIS SENSE OF IMPENDING DOOM,
WAITING FOR THE RESULTS TO COME BACK,
MIXED WITH A SENSE OF RELIEF,
BECAUSE I'M FINALLY GONNA GET AN ANSWER.
S
HER ENTIRE LIFE --
CRIPPLING MUSCLE AND JOINT PAINS,
EYE PROBLEMS THAT HAVE LEFT HER NEARLY BLIND,
AND BOUTS OF GASTROINTESTINAL ISSUES
THAT W WE SO BAD SHE HAD TO QUIT HER NURSING JOB.
NOW 50 YEARS AFTER SHE FIRST STARTED EXPERIENCING
THE BIZARRE SYMPTOMS,
ONE DOCTOR SEEMS TO HAVE FOUND A SOLID CLUE
AS TO WHAT'S BEEN CAUSING
THIS STRANGE CONSTELLATION OF MEDICAL ISSUES.
FOR THE FIRST TIME, I FELT THAT THIS MAN WAS GOING TO HEAR ME
AND THAT MAYBE HE HAD AN ANSWER.
Narrator: THREE WEEKS AFTER THE TISSUE SAMPLE OF LINDA'S LIP
WAS SENT OFF TO THE LAB,
THE FINDINGS FINALLY COME IN.
THE TEST RESULTS FINALLY REVEALED
THAT LINDA'S DIAGNOSIS WAS SJOGREN'S SYNDROME.
Narrator: SJOGREN'S SYNDROME IS A CHRONIC AUTOIMMUNE DISORDER
IN WHICH A PATIENT'S WHITE BLOOD CELLS
ATTACK THE BODY'S MOISTURE-PRODUCING GLANDS,
SUCH AS THE TEAR DUCTS AND SALIVARY GLANDS.
IT CAN ALSO SAP OTHER ORGANS OF MOISTURE,
INCLUDING THE KIDNEYS, LIVER, BLOOD VESSELS,
AND THE CENTRAL NERVOUS SYSTEM.
IN SEVERE INSTANCES, SUCH AS LINDA'S,
IT'S ALMOST AS IF THE BODY IS BEING SLOWLY DRAINED
OF ITS FLUIDS.
THE E ACT CAUSE OF SJOGREN'S SYNDROME IS NOT KNOWN,
NOR IS IT CLEAR EXACTLY HOW IT CAUSED
LINDA'S BIZARRE GASTROINTESTINAL PROBLEMS.
Dr. Laibson: IT'S NOT CLEAR HOW LINDA'S GALLBLADDER PROBLEM IS RELATED
TO SJOGREN'S SYNDROME.
IN STUDIES, ABOUT 10% OF PATIENTS WITH SJOGREN'S
DO HAVE G.I. PROBLEMS.
Narrator: SUDDENLY, ALL OF THE SYMPTOMS LINDA HAS HAD
SINCE SHE WAS A LITTLE GIRL MAKE SENSE.
LINDA'S CHRONIC DRY MOUTH IS CAUSED BY A LACK OF SALIVA,
WHICH, IN HEALTHY INDIVIDUALS,
BREAKS DOWN FOOD CAUGHT IN THE TEETH.
THIS PROTECTS S E TEETH FROM BACTERIA,
WHICH CAUSE TOOTH DECAY,
BUT IN LINDA'S CASE,
HER BODY HAS SUCH A DIFFICULT TIME PRODUCING SALIVA
THAT SHE WAS LEFT WITH A MOUTHFUL OF CAVITIES.
Dr. Laibson: ALSO, SJOGREN'S SYNDROME MAY CAUSE THE FLUID IN JOINTS
TO DECREASE.
Narrator: JOJOT FLUID ACTS AS A VITAL LUBRICANT
TO CUSHION THE JOINT AND ENSURE PROPER FUNCTIONING.
THE SAME ANTIBODIES THAT WERE ATTACKING HER MOISTURE GLANDS
WERE ALSO ATTACKING HER JOINTS,
CAUSING THE BOUTS OF EXTREME PAIN.
Dr. Laibson: PUTTING ALL OF THIS TOGETHER, WE WERE ABLE TO SAY,
"YOUR JOINT PAINS, YOUR DENTAL CARIES,
"AND YOUR DRY-EYE PROBLEM
"MAY ALL BE RELATED TO SJOGREN'S SYNDROME,
WHICH WAS UNDIAGNOSED FOR MANY YEARS."
AND JUST LIKE THAT, AT AGE 50,
AFTER A LIFETIME OF WONDERING, I HAD AN ANSWER,
AND THAT MOMENT WAS BITTERSWET
BECAUSE, YES, I HAD AN ANSWER,
BUT WHAT DOES THIS MEAN FOR MY FUTURE?
DO I EVEN HAVE A FUTURE?
WHAT HAPPENS NOW?
Dr. Laibson: SJOGREN'S ISISOT FATAL.
IT'S JUST VERY, VERY, VERY UNCOMFORTABLE.
THERE IS REALLY NO CURE
FOR THE VARIOUS PROBLEMS RELATED TO SJOGREN'S.
WE TREAT THE SYMPTOMS.
Narrator: DR. LAIBSON IMMEDIATELY PRESCRIBES SYNTHETIC MOISTURIZERS,
WHICH ALLEVIATE SOME OF THE JOINT PAIN AND EYE PROBLEMEM
AS WELL AS AN IMMUNOSUPPRESSANT
THAT SHOULD HELP KEEP LINDA'S IMMUNE SYSTEM IN CHECK.
WHILE THE TREATMENT IS BY NO MEANS A CURE-ALL,
FOR THE FIRST TIME IN HER LIFE,
LINDA BEGINS TO FEEL AS IF HER BODY HAS TURNED A CORNER.
I BELIEVE MY SYMPTOMS ARE MORE UNDER C CTROL.
I THINK SHE'S DOING MUCH BETTER THAN SHE WAS BEFORE.
SHE'S JUST LEARNED HOW TO WORK AROUND IT.
WHEN SHE'S FEELING GOOD, SHE PUTS EVERYTHING INTO THAT TIME.
Narrator: AS LINDA LEARNS MORE ABOUT THE DISORDER
THAT HAS PLAGUED HER THROUGHOUT HER ENTIRE LIFE,
SHE REALIZES JUST HOW LUCKY SHE WAS
TO HAVE BEEN DIAGNOSED AT ALL.
DESPITE ESTIMATES THAT 2 MILLION PEOPLE HAVE SJOGREN'S
IN THE UNITED STATES,
IT'S OFTEN DIFFICULT TO DIAGNOSE,
BECAUSE ITS HALLMARK SYMPTOMS -- DRY MOUTH AND DRY EYES --
ARE SO COMMON.
TODAY, LINDA IS A PASASONATE VOLUNTER
WITH THE SJOGREN'S FOUNDATION,
EDUCATING OTHERS ABOUT THE DISEASE.
I'VE LEARNED TO JOIN INTO THE SJOGREN'S SYNDROME FOUNDATION,
AND THAT THAT CAN BE AN EMPOWERING EXPERIENCE.
I'M NOT LETTING THTH DISEASE STOP ME
FROM DOING ANYTHING OR LIVING MY LIFE.
I'M GONNA GO OUT KICKING AND SCREAMING.
Narrator: WHILE LINDA CHARLES SPENT MORE THAN 50 YEARS
BATTLING ONE MEDICAL ISSUE AFTER ANOTHER,