dermatologist zero. zero zero. the way x p. works is that there's a different subtypes of x p there's x p a x p b x p c all the way to x p g there's also an x p variant each one of those cases like it is next p.c. means what type of this missing from their d.n.a. she's missing the x p c. d.n.a. it also indicates what level her body. where i might repair it in ninety eight percent if i get sunburned i heal quickly she repairs the two percent way she does it becomes permanent damage. damage. becomes a dead dead skin matter dead cell matter. fortunately sometimes these cancers can spread to the patients and the cancer is

a big. first . well as. well i was does it. hard for me to understand why. we're able. to say. so and this picture she was for this was our first. and she was able to see him here in a very mobile right up by just like any other kid here she is it just a happy little kid. next to another camper or know she's lost her hearing has a lot of ice a issues a lot of uneven issues she struggles with. weight or trouble

walking. back aches. it's the neurological aspects. remember this is a. pathway. which . would be repaired. in some way. but having nothing to do with. what the. people. most of the patients who have found in japan.

are sensitive to the sun but. here in ventura we. can. we have. we can do x. rays. scans of the brains of the patients and the brains that are actually shrinking inside their heads the scole gets thicker in the brain spits. i live a life that you're the only one doing this. you did it that. i was i was like in thirty three wells. made fun of me because i had to have my son. protective clothing you know i just imagine myself as a pound ukraine. just looking like

a party so i just saw that as opposed to. you know have. all your review soon oh you know. if you step out in the sun you know you know. in school time they're like shannon like where do you go during the summer and i'm like actually i go to place called camp sundown and their leg was that i don't like oh it's a camp for people that can't go out in the sun and they're like so vampire camp and i'm like no no no like they're not vampires they just can't go on a sign. that it's them but. if you see. this is like a safe house i guess they don't have to talk about what they go through with us

because we understand and i think that's like the main point of camp is like we're here to keep you safe but at the same time. we understand what you're going through . so you don't have to tell us your story because we understand so just have fun. doing you know it's lunacy that things would look at what was a hard days but i didn't. it was. a member look at what was originally. that we were at the new york state museum with our campers and we're here to see just the exhibits of new york state natural history animals of the past and future indian. records and things the museum normally closes at five every night

that we're able to be here tonight because volunteers from the museum have come back late at night open the doors for us a lot of scrimmage and. that one single digit but. yeah. i live in queens new york. and i don't come every year but i started coming here when i was two years old so i basically grew up here i've been coming with my older brother chris but my older brother having experience just it's hard you know he doesn't really go outside during the day it's hard to i can go out with people during the nighttime because either people have school or work so well you know he's either inside all the time or you know they just pull for walks so when he comes here just he's able to do whatever he wants to do you know he has something

to do he's occupied you know he has friends. on the next hour right here. you know we didn't. like get. to move back. to the building a. good. i'm. right back where we were living. as a picture of my brother nine when we were young on our first serious camp. at this i think the camp fire i used to be attached to him very clean and stuff. baby me my brother every once the family here going up with each other i mean a lot of people a family the city of memphis tisha is that says it was. seven.

of the five and. i had. one of them does august but. we had our apartment because a bird. had my tights are. trying to think there's like one type of rock which is just an extra. there which is like a mixture of different types and sized paddles either fused together. your boyfriend. understand they here. as over those. who are.

now why. do. i can't. you know. have a girl. if you look into both the person of your choice is there anything. wow i want this to see if someone of that has strengths and. i'm going to. somebody that i have strength to go with it would have to be some of the that would be supportive under the surgeries the man in the biopsy that was the you know. somebody like give me a positive mindset you know but first and then it was a tough one so when you have somebody who understand.

going to the grocery store. so it's by outside. but for the purposes of the video you know my son dear this is what i would normally have to wear when i go outside when it's not sun. one of the places i lived i lived in city i would get shot of that all the time. i think a lot of people in town recognize me by sight but they don't really know my name. it's kind of awkward to just like stop in and say hey i'm jason and this is why i wear this gear you know. that then you know. by. the by police and stopped by police. stout by complete strangers you know people taking pictures of me and you know laughed

about it i'm not really sure why. i mean i know i look kind of weird but. those twenty confuse me i don't know if i saw someone walking down the street like that if i try to keep my distance. i don't know who this guy is why is just like this just try to keep my distance but so for some reason people like. you know keep your face about it understand why. you know world of big part of the law and conspiracy it's time to wake up to dig deeper to hit the stories that made history media refuses to tell more than ever we need to be smart or we need to stop slamming the door on the back and shouting past each other it's time for critical thinking it's time to fight for the middle for the truth the time is now for watching closely watching the

hawks. donald trump doubts of a meeting with vladimir putin doesn't seem like a big deal given the already polls. states of affairs between the two countries to the manner in which it was cancelled over twitter may sting the kremlin more than the cancellation itself is the mythical trump truth in a bromance finally over. u.s. veterans who come back from war often tell the same stories. were going after the people who were killing civilians they were not interested in the wellbeing of their own soldiers either they're already several generations of them so i just got this memo from the circulating branches off says we're going to act and destroy the government and in seven countries in five years americans pay for the wars with

their money others with their lives if we were willing to go into harm's way and willing to risk being killed for a war surely we can risk some discomfort for an easy miss for. the way to the united states is dangerous for most of the illegal immigrants. who are going to most just as they would a simple i want to become lost and i want to ask some just about what if many of them look for refuge in the so-called sentries sides of the refuse to share information about undocumented migrants with federal authorities how to best friends i asked bank of mom. i belive it best when i get a man or a westerner what that. they have or what are their options to stay in the country

with donald trump in the white house all over forty gravels they also feel the have to be bad to the government though i said to many couples. who were transported to political polls a few outputs of a few of the hope of the. we should start a game to discuss where it can call put chancellor merkel runs has said we have built up a lot of religious people in germany and europe and russia and to destroy a bridge this is quite easy and very false. but the liberals would take a whole lot of. condition i have is known as era throw poetic purple feria. acronym is p.p. . i was. four years old when i first remember having

a first attack from the sun and i was diagnosed when i was a weapon the pain is indescribable it's feels like really really bad chemical burn but it goes through your skin in your most down to the bone and there's no relief painkillers don't work and the last for five days to a week pretty debilitating. and i was dating jason i mean it was definitely is a different experience because there's two things that night but i mean jason's a person who. peeping south side of the box really easily and so i never felt like i was missing anything i mean. just like i mean it's just so he's so happy you know he didn't play victim to the world he didn't play like. that he couldn't do anything. you

were. there's no cure. genetic disorder. we decided we would have children obviously because we have two of them and. actually neither one of them have a p.p. and we genetically tested them for that but if they did have a p.p. we were not a very good at it either because as we both know they can have a phil in life with the p.p. you know and jason's electrician he he's the provider of the family he works full time right now i work as an in-house maintenance. for a manufacturing plant i work during the night shift and that way you know i don't have to be in the sun is something goes wrong outside the plant i can go up in the darkness and not have to worry about having any p.p.

attack on cloudy days i can still i can so get sick but it's like. so i got a sunny day i get like three minutes we're going. to cloudy day anywhere from an hour to two or three hours. you know family time to train times innocent people look to the weather for like what what's the weather going to like me want to take makes me want to eat you know like a strange thing to watch a movie is reversed you know it's like. to go out and. play out in the rain paddles and we definitely had picnics in the rain man you can . get to see the skin. there is girl.

me i did a track and the rain is the best it's rainy and the clouds are usually dark. ok. normally windows are to use for light to bring light into the house and often they'll build it so that in the most windows or in the direction of sunlight we didn't of course want the

sunlight in our house but you know we don't want to let sally live in the dark so we have these windows here the orange looking ones and that's an amber tint it's a film that they can put on the window that they typically use for medical technology remember where at camp sundown it's for people with x.p. mostly you know. those people get harmed by ultraviolet light or u.v. light. then my condition is p.p. and people with e.p. p. are sensitive to blue light so when i'm in the sun outside i can't be in the sunlight because it's got that blue light but on the inside i can put my hand right up to the window and not have to worry about it because all the light to harm is because blocked. as you know light contains a rainbow of colors and it contains colors that you can see. like

a light these are different energies of light and so green has more energy than red blue has more energy green and has more energy than blue. we can see the ultraviolet light. but we cannot and it has the highest energy and with. a range of energies as well moved to this is blocked by the ozone layer but some of it gets through. my grandfather had a son our g. since childhood we don't know what exactly he had. and jake started having we are three actions his very first moment he was ten months old. and we couldn't really figure out what it was and by the time that he was about three years old. we started watching because of my grandfather started our teeth because we noticed it was seasonal so he would break out as soon as you know sort of spring

started and it would and close to the beginning of winter and every year it kind of just got a little bit stronger and a little bit more intense and a little when it became a little more intense it was easier to pinpoint what it was all. we actually need this different types of. uva is the right to see. it's always there during the day. is what gives you heat the rays that you could feel from the sun so when you go out in the some other. things you can feel the sun beating on your skin right yet that's u.v.b. so when you go outside in the winter do you feel that heat beating on your skin when you're outside. there is.

well we're going to. well it's not very easy to because it feels like everyone discovered. and you kind of appreciate it a bit more when you go. this is a window that's dark. for me it's not as. diseases are affected by. this is. one of the things that we discuss is the use of a u.v. meter this is a u.v.

meter and the way the t.v. meter works is that there is a photo electric cell here at the top of the meter and all you do is shine out photoelectric cell at a light source for example the sunlight coming through this window. as you can see that you register. numbers and. this. is too much and will be causing damage. and if we step. in the. enough to cause significant amount of damage to people with. for even a short amount of time being outside in this amounted to. no more

like a few seconds. one two three four any . how do you. or. i experience a genetic disease in the united states in europe x.p. is about one in a million in other parts of the world it's much more common for instance in japan it's one in twenty thousand and we did some studies that show most of the patients with x.p. plan have the same patient of the same predicament d.n.a. and we call that a fountain mutation and we were able to do studies of the d.n.a. and show that this founder really taishan one hundred generations ago in japan which is approximately two thousand years ago so that pay attention has been around for the. year just are a perfect example. i started. a

matter that year she thought she was. worse me or. she little by little she. she opened the door no you see her right in the open top. plain because she knows she's not alone or with its feet. whereas a church on fire company church down new york and the church health care company that high for companies together i think and games for our kids so they allow them to do water games and they're dressed up in the fireman's outfits so they get to feel what it's like to be a fireman all the ows. and they suit against each other with water and then they're going to have some hot dogs and some s'mores and they're going to head back in place games ever.

but. there is a lot of people out there with. worse or cases as you know or suggest that they speak worse it is that he is going to have a positive mindset you can read. you know his heart yes i've been the president will take speak well a little because we want to be stuck in your house or your room in the summertime. and. i know that feeling and i know how a lot of people go through a. depression or anxiety because it's not a it's not

a good kid's years after that a good support system at home or somebody to talk to that's what camp is about you know we make you feel like part of the family and you just want to go home afterwards. they you want to stay forever. well you can hear that fox. can. you find me. and say next.

i think. that's funny as i knew she needed that community. whom get you killed and

have to keep. going i may be made to move on to some of the money. to build. this out of need. but all right. we're. going to hear about it. a little difficult to get along has a funny but it was you don't love me will you. write down the bank call for the work on the base walker. and this is going to go he would develop a new treatment there internationally known that these industries are new to simply

ignored my. mother. and the mother of them like me and. the end of this. day's news on the week's top stories from the g. twenty wraps up in argentina where the potential for the bruising trade war between the united states and china plus we look at the much anticipated conversation between presidents trump and focusing on the sidelines. as global concern is russia and ukraine approaching the brink of open conflict up to russia's.