SCRIPT OF SARCOIDOSIS VIDEO
DISEASE.....
PART OF THE HUMAN EXPERIENCE...
THROUGHOUT HISTORY OUR CONTACT WITH IT
HAS BEEN PAINFUL.. IF NOT DEADLY...
WE FIGHT BACK....
AND SOMETIMES WIN IMPORTANT VICTORIES
BUT SOME DISEASES REMAIN A MYSTERY
AND CONTINUE TO PLAGUE MAN...
SARCOIDOSIS IS SUCH A DISEASE...
THERE IS NOT KNOWN CAUSE...
THERE IS NO CURE FOR IT...
AND NO KNOWN WAY TO PREVENT IT.
SARCOIDOSIS CAN DEVELOP IN ALMOST ANY BODY ORGAN...
INFLAMMATION AS SMALL LUMPS CALLED GRANULOMAS APPEAR
IN AFFECTED TISSUES... THIS OFTEN INTERFERES WITH
NORMAL ORGAN FUNCTIONING..
THE AMOUNT OF INVOLVEMENT VARIES WITH THE INDIVIDUAL..
FOR MANY SARCOIDOSIS SUDDENLY APPEARS AND THEN DISAPPEARS...
THESE ACUTE CASES LAST ONLY SEVERAL MONTHS...
FOR OTHERS SARCOIDOSIS DEVELOPS MORE GRADUALLY
AND IN THIS CHRONIC STATE CAN GO ON TO PRODUCE
SYMPTOMS FOR A LIFETIME....
THE MOST COMMON FORM OF SARCOIDOSIS AFFECTS THE LUNGS...
INFLAMED CELLS INTERFERE WITH THE LUNGS' NORMAL OPERATION.
CAL WAS DIAGNOSED WITH SARCOIDOSIS OF THE LUNGS IN 1986..
ALTHOUGH CAL DOES NOT REQUIRE THERAPY AT THIS TIME,
HIS ACTIVE LIFESTYLE IS OFTEN AFFECTED.
(CAL) "I DON'T EVEN THINK ABOUT IT SOMETIMES, YOU KNOW.. I'M A VERY
ACTIVE PERSON.. PLAY A LOT OF TENNIS, GOLF, JOG, THE WHOLE 9
YARDS,..WORK 8,9,10 HOURS A DAY UNTIL IT HITS ME AND THEN I START
COUGHING OR GET EXHAUSTED, YOU KNOW...CAL..YOU'VE GOT SARCOIDOSIS
YOU KNOW...DON'T FORGET IT."
FOR OTHERS, SARCOIDOSIS CAN BE MORE DEBILITATING...
AT 17 STEVE BEGAN HAVING HIS FIRST SYMPTOMS OF SARCOIDOSIS..
(STEVE) "IT WAS MY LAST YEAR IN HIGH SCHOOL...I GUESS MARCH OR SO...I
WAS HAVING RED EYES A WHOLE LOT...AND ALSO I HAD SWELLING OF THE
JAW...IT LOOKED LIKE I HAD 2 JAW BREAKERS ON EACH SIDE..."
IN TIME STEVE'S SARCOIDOSIS MOVED TO HIS LUNGS...
HIS INVOLVEMENT REQUIRED SEVERAL OPERATIONS WHICH
RESULTED IN REMOVAL OF HALF HIS LUNG CAPACITY...
(STEVE) "EACH OF THE THREE OPERATIONS THAT I HAD WAS, YOU KNOW, VERY
LIFE THREATENING.. AND THEN THAT VERY LONG PERIOD OF ILLNESS..."
FOR THE PAST FEW YEARS, STEVE'S CONDITION HAS STABILIZED.
NOW, AT HIS OWN PACE, HE IS ABLE TO FISH AND HUNT...
SARCOIDOSIS CAN AFFECT THE EYES AND CAUSE INFLAMMATION OR
SWELLING... EVEN BLINDNESS...
GRANULOMAS CAN FORM ON THE SKIN AND CAN DAMAGE SKIN TISSUE
AND LEAVE SCARS...
ARTHRITIS CAN FORM IN THE JOINTS..
SARCOIDOSIS ALSO CAN CAUSE ENLARGED LYMPH GLANDS,
SPLEEN, AND LIVER...
AND IN SOME INSTANCES OCCUR IN THE HEART, NERVOUS SYSTEM,
AND BONES...
WITH GLYNDA SARCOIDOSIS MOVED FROM HER LUNGS TO HER BACK
AND NECK. THE PAST 9 YEARS HAVE BEEN DIFFICULT.
(GLYNDA) "THEY CALL IT BACK SARCOIDOSIS...AND SO I'VE GOT TWO
RUPTURED DISCS IN MY NECK RIGHT NOW...I'VE GOT A BULGING DISK ABOUT
MIDWAY OF MY BACK, AND THERE IN MY NECK THERE'S NO CUSHION...ALL MY
DISKS ARE SITTING ON TOP OF EACH OTHER...SO I'M IN CONSTANT PAIN..."
REACTION TO SARCOIDOSIS PRODUCES EXTREMES...
MANY PATIENTS HAVE NO SYMPTOMS AND
THE DISEASE GOES AWAY WITHOUT NOTICE.
OTHERS WITH VARYING DEGREES OF IMPAIRMENT
AND THEN THERE ARE PATIENTS WHO ARE SEVERELY
AFFECTED...EVEN FATALLY
DIAGNOSIS IS OFTEN DIFFICULT...
THE SYMPTOMS LOOK A LOT LIKE OTHER DISEASES...
FOR SOME PATIENTS A CORRECT DIAGNOSIS CAN TAKE
MONTHS EVEN YEARS...
SYMPTOMS INCLUDE SHORTNESS OF BREATH, A COUGH THAT WON'T
GO AWAY, SUDDEN APPEARANCE OF SKIN RASHES, INFLAMMATION
OF THE EYES, WEIGHT LOSS, FATIGUE, FEVER, OR AN OVERALL
FEELING OF ILL HEALTH....
ONCE DIAGNOSED PATIENTS ARE BEST TREATED BY A DOCTOR SPECIALIZING
IN THEIR SPECIFIC SYMPTOM...SUCH AS LUNG OR SKIN.
WHEN THERAPY IS RECOMMENDED PATIENTS MAY BE GIVEN
ANTI- INFLAMMATORY DRUGS SUCH AS ASPIRIN SUBSTITUTES...
FOR MORE SEVERE CASES CORTICOSTEROIDS ARE THE PRIMARY TREATMENT..
TREATMENT USUALLY RESULTS IN IMPROVEMENT AND INFLAMMATION IS
REDUCED..
CORTICOSTEROIDS HAVE A WIDE VARIETY OF SIDE EFFECTS WHICH INCLUDE:
MOOD SWINGS, SWELLING, WEIGHT LOSS, POTASSIUM LOSS, HYPERTENSION,
IMPAIRED WOUND HEALING, CATARACTS, DEPRESSION, AND SEIZURES.
DOSAGE SHOULD BE THOROUGHLY DISCUSSED WITH THE DOCTOR.
SARCOIDOSIS PATIENTS ARE OFTEN MISUNDERSTOOD...
THE PUBLIC KNOWS NOTHING ABOUT THIS DISEASE THAT
CAN AFFECT ALMOST ANY ORGAN IN THE BODY...
TREATMENT IN ITSELF CAN BE DEBILITATING...
THERE ARE EMOTIONAL SIDE EFFECTS AS WELL AS THE PHYSICAL...
(PAULA) "THE REALLY AWFUL THING WAS THAT THERE WAS NO ONE
TO TALK TO...NOBODY UNDERSTOOD WHAT I WAS GOING THROUGH...
JOURNALS WHICH I DID NOT UNDERSTAND...I MEAN IT WAS REAL
DIFFICULT...."
IN 1991, FEELING ALONE WITH SO MANY QUESTIONS AND NOT MANY
ANSWERS PAULA YETTE POLITE, A SARCOIDOSIS PATIENT HERSELF,
STARTED THE SARCOIDOSIS RESEARCH INSTITUTE.
SRI'S MISSION AND VISION FOCUSES ON:
PUBLIC AWARENESS OF THIS DEBILITATING DISEASE
PATIENT AND PROFESSIONAL EDUCATION
SPECIAL SUPPORT SERVICES FOR PATIENTS...
MEDICAL RESEARCH INTO THE CAUSES, DETECTION,
AND CURE
THERE IS SO MUCH TO BE DONE....
TO HELP PATIENTS:
KNOW THAT THEY'RE NOT ALONE...
(PATIENTS' STATEMENTS)
TO SHARE INFORMATION AND HELP OTHERS COPE
(PATIENTS' STATEMENTS)
TO FIND COURAGE IN SOMEONE'S HOPES & DREAMS
(PATIENTS' STATEMENTS)
TO FIND A CURE AND BRING AN END TO THIS
DEBILITATING DISEASE...
SRI IS HERE TO HELP
Sarcoidosis Research Institute
3475 Central Avenue
Memphis, TN 38111
(901) 327-5454
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