xeroderma pigmentosum society

2010 - 2014

XERODERMA PIGMENTOSUM

SOCIETY

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

BURNS NOT EVEN 5 MIN AFTER SUN EXPOSURE

BURN THROUGH SOCKS

DAY OF BURN 10 DAYS LATER

2 WEEKS LATER 3 WEEKS LATER

4 WEEKS LATER 7 WEEKS LATER AND NOW SOME IMPROVEMENT

PROTECTIVE CLOTHING

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.

WHEN OUTSIDE ALWAYS PROTECTED

ALEX GOING TO SCHOOL ALEX BREAK TIME

ALEX TODAY WITH HIS SISTER THAT DOES NOT

HAVE XP YOU CANT SEE A DIFFERENCE

SADLY OUR PATIENTS IN SOUTH AFRICA

OUR NIGHT CAMPS

THE END THANKS FOR YOUR TIME