xeroderma pigmentosum society
TRANSCRIPT
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2010 - 2014
XERODERMA PIGMENTOSUM
SOCIETY
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1. TO FIND ALL PATIENTS AND GET THEM
PROTECTED AS EARLY AS POSSIBLE.
2. HAVE A YEARLY NIGHT CAMP SO KIDS CAN
INTERACT WITH OTHER KIDS WITHOUT
BEING PUSHED ASIDE AND PARENTS GET
THE CHANCE TO FORM SUPPORT GROUPS
AND TALK TO DR’S.
3. DO AS MUCH AWARENESS CAMPAINES AS
POSSIBLE.
OUR GOAL
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BURNS NOT EVEN 5 MIN AFTER SUN EXPOSURE
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BURN THROUGH SOCKS
DAY OF BURN 10 DAYS LATER
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2 WEEKS LATER 3 WEEKS LATER
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4 WEEKS LATER 7 WEEKS LATER AND NOW SOME IMPROVEMENT
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PROTECTIVE CLOTHING
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THIS IS ALEX AGED 11 MONTHS. A WEEK AFTER BEING BURNT. HE WAS WEARING FULL SUN
BLOCK. ALEX CAN BURN IN THE SPACE OF 10 MINUTES ON A BRIGHT DAY. BY THE TIME ALEX
WAS 1 HE HAD ALREADY HAD 3 SERIOUS BURNS.
ALEX DOES NOT HAVE TO BURN FOR DAMAGE TO OCCUR, HE NEEDS ONLY TO BE IN PRESENCE OF
ULTRAVIOLET (UV) LIGHT.
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WHEN OUTSIDE ALWAYS PROTECTED
ALEX GOING TO SCHOOL ALEX BREAK TIME
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ALEX TODAY WITH HIS SISTER THAT DOES NOT
HAVE XP YOU CANT SEE A DIFFERENCE
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SADLY OUR PATIENTS IN SOUTH AFRICA
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OUR NIGHT CAMPS
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THE END THANKS FOR YOUR TIME