WEBVTT - Children of the Moon 0:00:33.391 --> 0:00:38.391 A secret society, a suspicious death, an elite New England 0:00:38.471 --> 0:00:42.232 graduate school, and a professor and student who come together 0:00:42.312 --> 0:00:46.072 to study an illicit form of magic and wind up 0:00:46.632 --> 0:00:51.112 in a dangerous romance. The arcade arts by its decovering 0:00:51.712 --> 0:00:56.072 the electrifying debut novel that is leaving readers breakfasts available 0:00:56.072 --> 0:00:57.312 at bookstores. 0:00:56.792 --> 0:01:06.151 Everywhere every day just before school, eleven year old Ema 0:01:06.232 --> 0:01:09.792 Suite follows a very specific routine. 0:01:09.992 --> 0:01:14.472 So like I wake up, brush my teeth, put on clothes, 0:01:15.152 --> 0:01:20.071 but I have to like put on sunscreen, and then 0:01:20.272 --> 0:01:23.312 when I have to go outside to get into the school, 0:01:23.911 --> 0:01:28.272 I have to put on gloves, a jacket and a hat. 0:01:29.032 --> 0:01:33.432 That's Emma. The protocol she's describing is to protect her 0:01:33.592 --> 0:01:36.872 from the sun, but it's not the same kind of 0:01:36.912 --> 0:01:39.912 protection you or I might want or need. 0:01:40.992 --> 0:01:43.672 But sometimes after two layers. 0:01:44.432 --> 0:01:48.432 Layers of clothing so that no square centimeter of skin 0:01:48.632 --> 0:01:53.712 is exposed, especially her head, Emma's hat, really more of 0:01:53.752 --> 0:01:57.792 a helmet, has a clear plastic sheet that covers her 0:01:57.952 --> 0:02:02.632 entire face. It's a sight that can sometimes provoke reactions 0:02:02.712 --> 0:02:03.952 from strangers. 0:02:04.552 --> 0:02:07.192 But I will say it's really difficult because the conversation 0:02:07.432 --> 0:02:10.992 always starts with Look at the cute little astronaut, Look 0:02:10.992 --> 0:02:12.552 at the cute little bee keeper. 0:02:13.672 --> 0:02:18.272 That's Emma's mom, Joanna. And what those people don't understand 0:02:18.472 --> 0:02:23.072 is that Emma has a very rare condition, one affecting 0:02:23.232 --> 0:02:26.672 less than three hundred people in the entire country and 0:02:26.792 --> 0:02:31.952 fewer than two thousand worldwide. It's called zero derma pigmentosum, 0:02:32.392 --> 0:02:36.992 or XP, and it means that Emma will never ever 0:02:37.431 --> 0:02:41.992 be able to get any sun exposure. Since being diagnosed, 0:02:42.191 --> 0:02:45.992 She's never felt the sun on her skin, never run 0:02:46.031 --> 0:02:50.911 out to recess, unencumbered by piles of clothing. Even as 0:02:50.992 --> 0:02:55.391 little as one single second of ultraviolet light can be 0:02:55.552 --> 0:02:57.072 super dangerous. 0:02:58.031 --> 0:03:02.272 So I actually explain it, like I say, you know 0:03:02.351 --> 0:03:06.151 how some people are like allergic to peanut butter or 0:03:07.031 --> 0:03:10.832 food allergies for example, while I'm allergic to the sun, 0:03:11.471 --> 0:03:18.392 and I explained that it's in my DNA and it like, I. 0:03:18.392 --> 0:03:23.151 Don't know, an allergy to the sun sounds impossible, but 0:03:23.351 --> 0:03:27.311 for Emma it's her reality. A life those with XP 0:03:27.512 --> 0:03:32.871 and their families navigate extremely carefully, sometimes not even going 0:03:32.911 --> 0:03:36.072 out during the day at all, one where windows and 0:03:36.272 --> 0:03:41.312 even light bulbs can have life altering consequences. Despite this 0:03:41.552 --> 0:03:45.792 formidable challenge, Emma and others like her are finding ways 0:03:45.832 --> 0:03:49.592 to move with grace, jumping from one shadow to another 0:03:49.712 --> 0:03:56.632 and finding comfort, even purpose in the darkness. Welcome to 0:03:56.872 --> 0:04:01.391 very special episodes and iHeart original podcast. I'm your host, 0:04:01.632 --> 0:04:05.192 Danish Schwartz, and this is Children of the Moon. 0:04:11.952 --> 0:04:14.712 Welcome back to very special episodes. So glad you've made 0:04:15.232 --> 0:04:18.712 our show part of your podcast listening routine. I'm usually 0:04:18.832 --> 0:04:22.912 joined here by Danish Schwartz and Sarah Burnett. Today was 0:04:22.952 --> 0:04:25.472 a bit of a whirlwind, so I'm going to keep 0:04:25.472 --> 0:04:28.991 this short and solo. It's a very special, very special episode. 0:04:28.992 --> 0:04:31.712 Today you're going to meet some wonderful voices who are 0:04:31.752 --> 0:04:35.311 all very gracious with their time, real quick here. Last 0:04:35.312 --> 0:04:39.072 week I asked at the top for a little brainstorming help. 0:04:39.272 --> 0:04:41.832 We're working on topics for the second half of twenty 0:04:41.872 --> 0:04:45.232 twenty six and beyond. I ask you would email us 0:04:45.351 --> 0:04:49.592 your all time favorite, very special episode, and many of 0:04:49.592 --> 0:04:51.592 you did. We got a lot of good feedback all 0:04:51.632 --> 0:04:55.432 over the map. No consensus, which is great love seeing 0:04:55.472 --> 0:04:58.472 that they're all my favorites. Were still got some good 0:04:58.552 --> 0:05:01.352 questions in there too, which will squirrel away for a 0:05:01.392 --> 0:05:04.152 future mail bag. But those email lines are still open 0:05:04.272 --> 0:05:07.872 very special episodes at gmail dot com check in. That's 0:05:07.952 --> 0:05:09.912 enough for me. Let's get this back to data. 0:05:11.712 --> 0:05:16.952 The sun, we are trained to worship it. We hear 0:05:17.112 --> 0:05:21.112 about the health benefits of vitamin D. We admire the 0:05:21.152 --> 0:05:26.231 bronzed skin of an outdoors enthusiast. Sun's out guns out. 0:05:26.472 --> 0:05:29.112 The sun will come out tomorrow, you can bet your 0:05:29.152 --> 0:05:33.592 bottom dollar. But for some, the sun isn't a symbol 0:05:33.712 --> 0:05:38.272 of wellness. It's the exact opposite, which begins with an 0:05:38.472 --> 0:05:43.552 upsetting episode of crying and panic. That's how most parents 0:05:43.752 --> 0:05:48.272 first find out about XP. For some families, the first 0:05:48.312 --> 0:05:53.351 sign is a severe blistering sunburn after only minutes outside. 0:05:54.032 --> 0:05:57.912 One parent described it as happening so quickly it's like 0:05:58.152 --> 0:06:03.072 time lapse photography. First a little dot, then a wound, 0:06:03.472 --> 0:06:07.392 then a raging blister, all within minutes. Then a rush 0:06:07.552 --> 0:06:12.072 to a pediatrician who might suspect food or detergent allergies 0:06:12.512 --> 0:06:17.192 before consulting an old medical textbook and finding out about XP. 0:06:18.112 --> 0:06:22.392 Dust off some ancient textbooks and you'll find case studies 0:06:22.432 --> 0:06:26.952 as far back as the eighteen hundreds, where doctors described 0:06:27.112 --> 0:06:32.592 patients with skin as delicate as parch and paper. Even today, 0:06:32.832 --> 0:06:34.992 doctors can easily be puzzled. 0:06:37.192 --> 0:06:41.712 So we go to this dermatologist and the physician assistant 0:06:41.792 --> 0:06:43.912 said something's wrong with her skin. That's not normal, and 0:06:43.912 --> 0:06:46.312 we were like, hey, no, no, it's okay. Like they said, 0:06:46.312 --> 0:06:46.952 it was Exima. 0:06:47.912 --> 0:06:51.672 That's Joanna again. Emma was just two years old and 0:06:51.872 --> 0:06:55.192 living in Virginia when she had enough sun exposure to 0:06:55.752 --> 0:07:00.352 damage her skin, causing a peculiar series of freckles. After 0:07:00.672 --> 0:07:04.832 many tests and many referrals, they finally got an answer. 0:07:05.472 --> 0:07:06.512 It wasn't eczema. 0:07:07.472 --> 0:07:09.952 They called me on the drive headed over to roanok 0:07:10.032 --> 0:07:12.112 She was with her dad, and then they asked me 0:07:12.152 --> 0:07:14.152 to pull over on the side of the road, on 0:07:14.192 --> 0:07:16.552 which I did, and then they shared with me that 0:07:16.592 --> 0:07:18.992 she had this rare disease and that we needed to 0:07:18.992 --> 0:07:21.152 get her in a room and close the blind. 0:07:22.552 --> 0:07:27.352 A chronic condition usually comes with more practical advice. Eat 0:07:27.472 --> 0:07:31.672 less sugar, take this drug. But life for people with 0:07:31.952 --> 0:07:36.472 XP gets turned upside down in an instant. Their bodies 0:07:36.672 --> 0:07:40.592 can't repair the damage to the DNA caused by sunlight 0:07:40.952 --> 0:07:45.312 the way most people can. The cellular reinforcements that normally 0:07:45.432 --> 0:07:49.912 arrive and fix us never show up without repair, the 0:07:50.032 --> 0:07:55.792 likelihood of developing malignancies goes up drastically. Children like Emma 0:07:55.872 --> 0:08:00.392 are ten thousand times more likely to grapple with skin cancers, 0:08:00.872 --> 0:08:04.992 mostly on the face and neck, than someone of average risk. 0:08:05.552 --> 0:08:10.592 While many photosensitive conditions can lead to complications, those with 0:08:10.952 --> 0:08:15.672 XP are generally at the highest risk for problems, but 0:08:15.752 --> 0:08:20.992 those details would come later. At the time of Emma's diagnosis, 0:08:21.312 --> 0:08:24.792 all Joanna really knew was that the sun had to 0:08:24.832 --> 0:08:27.232 be snuffed out completely. 0:08:27.232 --> 0:08:31.472 And so we did, and I took family medically. If 0:08:31.512 --> 0:08:34.272 I couldn't work, we couldn't. I didn't even know how 0:08:34.271 --> 0:08:36.952 to go to the grocery store, so it was a 0:08:36.992 --> 0:08:40.312 really difficult time. We put carpets in or I put 0:08:40.352 --> 0:08:42.752 carpets in the windows, and it was like an immediate, 0:08:42.792 --> 0:08:44.911 like life or die type situation. 0:08:45.752 --> 0:08:48.792 This would be a lot for any parent to take in. 0:08:49.672 --> 0:08:53.791 We tend to think of kids as naturally vulnerable. Having 0:08:53.792 --> 0:08:59.112 one that can't go outside without some premeditation is unfathomable 0:08:59.192 --> 0:09:03.392 for many. For Joanna it meant getting an education for herself. 0:09:03.712 --> 0:09:06.792 With XP so rare. It's not as though you can 0:09:06.832 --> 0:09:11.072 have a conversation with a pediatrician. Joanna had to learn 0:09:11.192 --> 0:09:13.432 on the go, literally. 0:09:13.672 --> 0:09:15.511 And trying to figure out how to live because she 0:09:15.512 --> 0:09:17.632 wouldn't wear her stuff, like in order for me to 0:09:17.672 --> 0:09:20.632 take her anywhere, I looked like I was kidnapping her 0:09:20.672 --> 0:09:22.352 because she would try to take her stuff off, and 0:09:22.392 --> 0:09:24.712 I'd have to throw a blanket over her, pick her 0:09:24.792 --> 0:09:27.872 up and get back in the car. Actually had to 0:09:27.872 --> 0:09:30.872 even purchase a new vehicle because trying to put so 0:09:31.712 --> 0:09:34.511 imagine a car you open the back door to put 0:09:34.512 --> 0:09:36.712 her in the car seat, you know, the five point 0:09:36.712 --> 0:09:37.632 harness with a kid. 0:09:38.672 --> 0:09:43.272 Emma has XPC, part of a spectrum of the disease. 0:09:43.752 --> 0:09:47.272 About a quarter of XP cases can result in severe 0:09:47.472 --> 0:09:54.152 neurological problems, with neurons suffering oxidative damage that cannot be repaired. 0:09:54.792 --> 0:09:59.992 Hearing loss or vision problems are not uncommon. XPC is 0:10:00.152 --> 0:10:05.112 not as closely associated with these complications, but Emma still 0:10:05.152 --> 0:10:09.072 has to be mindful with any version of XP. Once 0:10:09.112 --> 0:10:12.672 a child is diagnosed, their time under the sun is 0:10:12.752 --> 0:10:18.752 effectively over. Damage occurs so quickly that virtually no amount 0:10:18.872 --> 0:10:20.592 of ultraviolet light is safe. 0:10:21.312 --> 0:10:24.992 I don't think people truly understand in the beginning it 0:10:25.032 --> 0:10:29.792 takes a while to educate that we're talking zero exposure, 0:10:29.992 --> 0:10:34.232 like even a second, you know today, in a second tomorrow. 0:10:34.312 --> 0:10:37.592 They all add up and it's commulative damage, and it's 0:10:38.272 --> 0:10:38.952 it's permanent. 0:10:40.952 --> 0:10:44.912 That's why Emma's home is equipped with window tint When 0:10:44.952 --> 0:10:51.232 she needs to go out, Emma has a routine of sunscreen, layers, gloves, 0:10:51.272 --> 0:10:54.472 and a hat before making the trek from her home 0:10:54.592 --> 0:10:58.632 to the car, the better to protect her dry sensitive skin. 0:10:59.232 --> 0:11:02.232 Special eye drops are used to alleviate one of the 0:11:02.272 --> 0:11:03.592 other effects of XP. 0:11:04.472 --> 0:11:07.672 People just assume that XP is a skin disease, but 0:11:07.712 --> 0:11:11.272 it's much more than that. So her eyes would burn 0:11:11.792 --> 0:11:15.312 like she would just start screaming and crying. My eye 0:11:15.352 --> 0:11:17.632 are burning. My eyes feel like they're burning. And so 0:11:17.672 --> 0:11:19.672 we tried all the eye drops in the world and 0:11:19.752 --> 0:11:23.032 then nothing worked except for serum eye drops, which is 0:11:23.032 --> 0:11:23.912 made out of your blood. 0:11:24.872 --> 0:11:28.072 The car's windows are tinted to make sure Emma isn't 0:11:28.112 --> 0:11:33.592 exposed to UV while right. But driving presents another problem. 0:11:34.232 --> 0:11:36.592 And I thought, if we get in a car accident, 0:11:36.952 --> 0:11:39.032 or if we get pulled over by a police officer, 0:11:39.072 --> 0:11:41.072 what am I going to do? I can't roll down 0:11:41.112 --> 0:11:42.952 the window the next thing, I know, they're probably gonna 0:11:42.952 --> 0:11:45.552 be dragging me out of the car, you know, And 0:11:45.672 --> 0:11:49.592 so I went on Etsy and had them create a 0:11:49.672 --> 0:11:52.192 sticker for me that's on the back of the car 0:11:52.232 --> 0:11:55.112 that says, you know, child with special Needs XP look 0:11:55.152 --> 0:11:55.912 and glove box. 0:11:57.632 --> 0:12:01.272 Arriving at school, Emma joins her fifth grade class. In 0:12:01.392 --> 0:12:05.752 acknowledgment of Emma's condition, the district has put protective film 0:12:06.232 --> 0:12:10.272 on all the windows of the building. Peers understand for 0:12:10.352 --> 0:12:11.032 the most part. 0:12:11.912 --> 0:12:15.152 Yeah, So, like when I was in second grade, I 0:12:15.232 --> 0:12:17.432 kind of like got a lot of bullies who are 0:12:17.432 --> 0:12:22.952 in fifth grade, and my brother's friend actually found out 0:12:23.232 --> 0:12:27.472 and told the principal or the counsel or school counselor. 0:12:28.312 --> 0:12:30.272 So he's very nice. 0:12:30.072 --> 0:12:35.752 And helpful, but they kept calling me like astronaut, the keeper, 0:12:36.232 --> 0:12:40.712 like sunkeeper, like she said, just a lot of not 0:12:40.832 --> 0:12:41.552 good names. 0:12:42.512 --> 0:12:47.472 School is a kind of controlled setting. When Emma ventures elsewhere, 0:12:47.752 --> 0:12:51.272 Joanna needs to keep a constant watch of UV levels. 0:12:51.632 --> 0:12:54.992 She uses a light meter, assessing when it's safe for 0:12:55.032 --> 0:12:57.552 Emma to peel off her protective attire. 0:12:58.112 --> 0:13:00.391 So we carry the UV light meter everywhere we go. 0:13:01.032 --> 0:13:04.752 The meter should ideally read zero nanometers. 0:13:04.912 --> 0:13:06.872 I would not let her outside if it was anything 0:13:06.872 --> 0:13:11.792 above a zero. Now it's a five, so I budged 0:13:11.832 --> 0:13:15.152 a little teeny bit so that allows her during the 0:13:15.152 --> 0:13:18.752 golden hour, right, so when the sun is gone, right 0:13:18.792 --> 0:13:21.072 before the sun goes down, it might be like a 0:13:21.152 --> 0:13:23.192 ten or a five for five minutes. 0:13:23.912 --> 0:13:26.472 The meter is one of the few things for XP 0:13:26.952 --> 0:13:31.072 Joanna can buy off the shelf or on Amazon. Protective 0:13:31.152 --> 0:13:35.352 hat with it's built in fan is custom made. There 0:13:35.352 --> 0:13:40.152 are no medical equipment places that routinely sell XP friendly attire. 0:13:41.072 --> 0:13:41.752 It's a nightmare. 0:13:41.832 --> 0:13:43.031 It's it's a process. 0:13:43.152 --> 0:13:47.152 Yeah, so I have to make them myself. I don't 0:13:47.192 --> 0:13:48.872 like doing it, and I don't like sewing. I'm not 0:13:48.992 --> 0:13:50.912 very good at it. First you have to find a 0:13:50.952 --> 0:13:53.912 hat that isn't meter, or you have to find multiple 0:13:53.912 --> 0:13:55.032 hats that you can put together. 0:13:56.192 --> 0:13:59.712 But when things line up at night, the meter at 0:13:59.912 --> 0:14:03.432 or close to zero, Emma can peel off those layers 0:14:03.472 --> 0:14:06.112 and feel the cool air on her bare skin. 0:14:08.032 --> 0:14:11.032 Yes, I love being at night. I really want to 0:14:11.072 --> 0:14:15.552 like stay outside. Sometimes I go out in my backyard 0:14:15.672 --> 0:14:19.152 and just like go barefoot with like short sleep and 0:14:19.272 --> 0:14:25.112 short far so I feel most comfortable, like at the lake. 0:14:25.472 --> 0:14:30.192 Sometimes like I just like flow, like on my back 0:14:30.512 --> 0:14:33.392 and just like look at the stars and just like 0:14:33.592 --> 0:14:36.512 feel comfort. And it's nice since I dar'n't wear any 0:14:36.552 --> 0:14:37.152 of my stuff. 0:14:39.152 --> 0:14:43.072 It's hard to separate Emma's story from Joanna's. It's been 0:14:43.112 --> 0:14:47.512 said that XP isn't a singular diagnosis. Instead, it's a 0:14:47.632 --> 0:14:52.472 diagnosis given to the entire family. That's because everyone has 0:14:52.512 --> 0:14:55.472 to be aware of the pitfalls of sun exposure and 0:14:55.872 --> 0:15:00.552 how routines need to be modified to accommodate that, and 0:15:00.752 --> 0:15:03.632 parents have to endure the feeling of wondering how to 0:15:03.832 --> 0:15:08.112 best care for them. There's no manual for XP, no 0:15:08.352 --> 0:15:12.232 guidebook for how to give a child and enriching life 0:15:12.712 --> 0:15:16.992 while respecting their body's hyper reactive response to sunlight. 0:15:18.072 --> 0:15:21.872 And I'm always amazed. I get emotional a day or 0:15:21.872 --> 0:15:24.872 two after I give the talk because I'm reminded, like 0:15:25.112 --> 0:15:28.072 I do not live a normal life, you know, but 0:15:28.152 --> 0:15:31.272 you forget because it's our new normal, right. 0:15:32.392 --> 0:15:38.272 XP is a lifelong disease. It never spontaneously resolves. Other 0:15:38.592 --> 0:15:42.912 non skin cancers can arise, like ovarian or thyroid cancer. 0:15:43.432 --> 0:15:47.992 There can be early onset menopause, and having XP doesn't 0:15:48.112 --> 0:15:52.592 absolve you of any other health problems. Last fall, Joanna 0:15:52.632 --> 0:15:55.472 and Emma received some upsetting news. 0:15:56.272 --> 0:15:59.032 So we were trying to be very proactive and did 0:15:59.032 --> 0:16:02.512 an annual MRI and they found that she actually has 0:16:02.592 --> 0:16:06.192 six brain tumors that she was diagnosed with last fall. 0:16:07.272 --> 0:16:09.112 I took time off of work again. We went to 0:16:09.432 --> 0:16:13.392 Boston Children's Hospital. Nobody can explain it. They thought she 0:16:13.472 --> 0:16:16.392 had a second rare disease called NF one, but she doesn't, 0:16:16.672 --> 0:16:18.152 so they don't really know what to do with it. 0:16:18.672 --> 0:16:20.432 They just said, let's just see if they're growing, and 0:16:20.512 --> 0:16:24.912 so we do a brain MRI often and they are 0:16:24.952 --> 0:16:27.672 and growing, so we're just not going to worry about them. 0:16:28.192 --> 0:16:32.112 XP can mean a life of extreme routine coupled with 0:16:32.352 --> 0:16:37.272 uncertainty because Emma's condition was caught at an early age. 0:16:37.352 --> 0:16:40.352 She's doing all the right things, but what sort of 0:16:40.392 --> 0:16:52.112 future might await Emma and others like her. Imagine walking 0:16:52.192 --> 0:16:55.592 into a room for the very first time. You might 0:16:55.672 --> 0:16:59.912 notice pictures or maybe a carpet that needs vacuuming. But 0:17:00.112 --> 0:17:02.792 Amy Townley is looking for other things. 0:17:03.792 --> 0:17:07.191 One other windows. I mean, the next thing I do 0:17:07.311 --> 0:17:08.032 is light bulbs. 0:17:08.712 --> 0:17:09.351 That's Amy. 0:17:10.111 --> 0:17:13.232 What kind of light bulbs are they using? Third is 0:17:13.752 --> 0:17:17.952 first windows, light bulbs. The third is just like just 0:17:17.992 --> 0:17:21.831 the overall environment. Basically like I almost feel like my 0:17:21.992 --> 0:17:24.952 eyes work. I've trained my eyes to work the same 0:17:24.952 --> 0:17:28.392 as almost a light meter, just because I have metered 0:17:28.792 --> 0:17:32.071 everything my whole life, and now I can look at 0:17:32.111 --> 0:17:35.232 something like, oh, that's probably you know, on the meter 0:17:35.472 --> 0:17:40.071 A twelve or fifteen, and usually I'm within three or 0:17:40.152 --> 0:17:43.871 four points. I guess you could say when I, you know, 0:17:43.952 --> 0:17:46.111 I just like guesstimate off of my eyes and then 0:17:46.152 --> 0:17:47.312 I actually you know. 0:17:47.392 --> 0:17:50.832 Meter her Amy is twenty four years old, earned her 0:17:50.872 --> 0:17:55.992 Bachelor of Science in Biological Sciences at Grand Canyon University 0:17:56.352 --> 0:18:00.111 and is currently a mom living in Arizona. Like Emma, 0:18:00.232 --> 0:18:04.992 she has XPC. All the precautions that Emma's mother takes, 0:18:05.032 --> 0:18:08.672 from window tents to layers of clothing. That's on Amy 0:18:08.752 --> 0:18:13.071 to do herself. But just avoiding the sun isn't enough. 0:18:13.752 --> 0:18:18.032 Fluorescent lighting is a big concern. Even some light bulbs 0:18:18.112 --> 0:18:22.072 give off UV light enough to cause skin damage if 0:18:22.072 --> 0:18:23.312 Amy isn't careful. 0:18:23.952 --> 0:18:26.752 So whenever I'm in a new environment, I always check 0:18:27.072 --> 0:18:29.992 the light bulbs or like the lights that in the room, 0:18:30.152 --> 0:18:32.312 because some light bulbs to put out heavy. 0:18:33.152 --> 0:18:36.631 It's not just lamps. Think about the light sources you 0:18:36.832 --> 0:18:42.351 encounter in everyday life. The tiny lights attached to surgical instruments, 0:18:42.752 --> 0:18:46.672 the flickering vending machine at a pizza parlor, the oncoming 0:18:46.712 --> 0:18:48.952 beams of passing cars at night. 0:18:49.512 --> 0:18:51.472 When I go to the dentist, they can't use the 0:18:51.552 --> 0:18:55.591 light at the dentist, or like the when I got braces, 0:18:55.912 --> 0:18:58.392 the curing light for braces. So there's a lot of 0:18:58.432 --> 0:19:02.432 things that you know you do have to take precautions for, 0:19:02.632 --> 0:19:06.272 but a lot of time the media really bends them 0:19:06.312 --> 0:19:08.111 to make it I guess worse. 0:19:09.392 --> 0:19:14.512 Ah, the Media Present Company excluded. Of course, Hollywood has 0:19:14.592 --> 0:19:17.792 taken a crack at XP a few times. In the 0:19:17.872 --> 0:19:21.872 two thousand and one horror film The Others, Nicole Kidman's 0:19:21.952 --> 0:19:25.872 two children are forced to remain indoors due to a 0:19:25.912 --> 0:19:30.192 photosensitive condition. In the nineteen eighty eight film The Dark 0:19:30.232 --> 0:19:34.152 Side of the Sun, a young Brad Pitt plays Rick, 0:19:34.552 --> 0:19:39.391 a teen afflicted with an XP like condition. Fond of 0:19:39.512 --> 0:19:44.911 riding motorcycles, Rick uses his helmet and leathers to shield 0:19:44.952 --> 0:19:49.512 himself from the sun. The movie is obscure, released years 0:19:49.552 --> 0:19:54.192 after Pitt actually became famous. A more recent example is 0:19:54.432 --> 0:19:59.712 Midnight Sun, a twenty eighteen movie starring Bella Thorne. Bella's 0:19:59.832 --> 0:20:03.832 character finds XP to be an obstacle in her love life. 0:20:04.432 --> 0:20:08.792 She's a kind of vampire pastiche, only daring to come 0:20:08.832 --> 0:20:11.831 out at night and wondering if she'll ever be able 0:20:11.832 --> 0:20:16.952 to fully commit to Charlie played by Patrick Schwarzenegger. These 0:20:17.032 --> 0:20:22.871 movies tend to treat XP as a romantic tragedy, something 0:20:22.952 --> 0:20:28.272 to separate lovers from happiness. For actual XP patients, their 0:20:28.832 --> 0:20:33.352 frustrating and only contribute to a societal view of XP 0:20:34.152 --> 0:20:37.272 as fodder for young adult melodrama. 0:20:38.072 --> 0:20:40.111 And then you know, I'm walking down the street the 0:20:40.152 --> 0:20:42.192 next week and someone comes up to me like, oh, 0:20:42.232 --> 0:20:44.792 do you have that condition that the girl in that 0:20:44.912 --> 0:20:48.912 movie has? And I'm like yes, but you know, I'm 0:20:48.912 --> 0:20:50.672 not going to die because I'm out in the sun 0:20:50.752 --> 0:20:54.992 for two seconds. First, I'm going to protect myself. But like, 0:20:55.272 --> 0:20:58.912 it's just wild how they portray XP in you know, 0:20:58.992 --> 0:21:00.032 TV shows and movies. 0:21:01.232 --> 0:21:07.392 Fortunately, Midnight Sun was no Twilight, so stereotypes about XP 0:21:07.752 --> 0:21:12.472 may not be too widespread. It's too rare a condition, 0:21:13.072 --> 0:21:16.712 and it's that rarity that creates a real problem for 0:21:16.752 --> 0:21:20.792 those living with it. When Amy played soccer in middle school, 0:21:21.032 --> 0:21:23.912 she was able to wear ice packs under her layers 0:21:23.952 --> 0:21:28.152 of clothing to keep from getting heat exhaustion. But sometimes 0:21:28.192 --> 0:21:30.672 those layers can prove concerning. 0:21:30.472 --> 0:21:32.232 Because a lot of the time, because I'm wearing so 0:21:32.232 --> 0:21:35.952 many layers to protect my skin, I get extremely hot 0:21:36.112 --> 0:21:39.632 and in some cases I have passed out because of 0:21:40.072 --> 0:21:43.712 the extreme heat that expew patients endure because of having 0:21:43.752 --> 0:21:44.672 to protect ourselves. 0:21:45.112 --> 0:21:49.152 The danger hasn't disappeared. Even though she was diagnosed as 0:21:49.192 --> 0:21:52.672 a baby. The sun exposure she did get has long 0:21:52.872 --> 0:21:54.152 term consequences. 0:21:54.392 --> 0:21:57.152 Since I was diagnosed at eighteen months old, I've had 0:21:57.392 --> 0:22:02.192 thirty seven skin cancers removed, majority from my face. The 0:22:02.232 --> 0:22:05.192 way that it was explained to me is that a 0:22:05.232 --> 0:22:08.392 lot of the time cancers that will pop up now 0:22:08.632 --> 0:22:12.112 on my skin are consequences of when I was exposed 0:22:12.152 --> 0:22:16.592 before I was diagnosed, which I mean, I'm almost twenty 0:22:16.592 --> 0:22:19.871 four now, so that seems pretty crazy. But some cells 0:22:19.912 --> 0:22:23.472 take a really long time to grow and populate, and 0:22:23.512 --> 0:22:25.432 then they just pop up, and then once they're there, 0:22:25.472 --> 0:22:26.552 they just grow and grow and go. 0:22:28.072 --> 0:22:32.032 Some expe patients can have one hundreds of procedures to 0:22:32.152 --> 0:22:36.672 keep lesions from spreading. There is an upside to this, though, 0:22:37.152 --> 0:22:42.432 With vigilance and preventative care XP patients are living longer, 0:22:42.672 --> 0:22:48.351 better lives. It's just a different kind of life. Take dating, 0:22:48.552 --> 0:22:52.592 for example. Growing up, Amy found herself trying to explain 0:22:52.712 --> 0:22:58.992 her condition to potential partners. Some understood, others didn't. 0:22:59.872 --> 0:23:05.712 I didn't actually date till college, just because I mean, 0:23:05.872 --> 0:23:08.912 obviously I was interested in boys in high school. But 0:23:09.032 --> 0:23:10.992 you know, no high school boy is going to want 0:23:10.992 --> 0:23:13.392 to go out with the girl that can't go to 0:23:13.432 --> 0:23:16.032 the football game or go sit at the baseball game 0:23:16.352 --> 0:23:20.472 or go you know, I don't know the activities you 0:23:20.512 --> 0:23:23.392 do when you're in high school on dates, outside and 0:23:23.552 --> 0:23:24.232 all those things. 0:23:24.992 --> 0:23:28.432 Then a few years ago Amy met her future husband. 0:23:28.952 --> 0:23:31.872 She told him about her photo sensitivity. 0:23:32.552 --> 0:23:34.512 He didn't say anything originally, like when I put my 0:23:34.552 --> 0:23:36.631 hat on or anything, but I was like, hey, I 0:23:36.672 --> 0:23:39.392 just want to like tell you, by the way, you know, 0:23:39.472 --> 0:23:41.831 I've wroa AE shack disorder can't be exposed to sunlight. 0:23:41.912 --> 0:23:44.712 And he's like, okay, cool, and they just kept eating 0:23:44.792 --> 0:23:49.192 like it wasn't even that like much of an issue, 0:23:49.512 --> 0:23:52.512 which partially made me like him even more because he 0:23:52.552 --> 0:23:53.312 really didn't care. 0:23:54.112 --> 0:23:58.792 Solid guy. They married and settled in Arizona. You might 0:23:58.792 --> 0:24:03.112 be thinking, why Arizona, of all places, why doesn't everyone 0:24:03.192 --> 0:24:06.472 with XP just move to, say Seattle. 0:24:06.992 --> 0:24:08.792 A lot of the time, it's like I'm going from 0:24:08.872 --> 0:24:11.592 inside my air conditioning apartment to my air conditioning car 0:24:11.712 --> 0:24:14.472 into an air conditioned building. So it's like I'm just 0:24:14.512 --> 0:24:18.952 making small hops in between everywhere. So people I always 0:24:18.992 --> 0:24:22.792 get the question like, why would you choose Arizona like 0:24:22.832 --> 0:24:26.992 this because of the sun and my mostly my reaction 0:24:27.192 --> 0:24:30.272 is the sun is literally everywhere. That does not matter 0:24:30.432 --> 0:24:33.792 where I go. It's just, you know, you can't get 0:24:33.832 --> 0:24:37.032 away from the sun by choosing a different state. 0:24:38.272 --> 0:24:41.272 But as with many adults who have what some perceive 0:24:41.432 --> 0:24:45.831 as a disability, Amy sometimes finds that others prefer to 0:24:45.872 --> 0:24:49.552 make decisions for her that they believe they know what's 0:24:49.632 --> 0:24:50.312 best for her. 0:24:50.872 --> 0:24:52.832 Or I'm not going to invite her to this Fourth 0:24:52.912 --> 0:24:55.752 of July party I'm having, or I'm not going to 0:24:55.832 --> 0:25:00.152 invite them to this Easter brunch, you know, whatever the 0:25:00.352 --> 0:25:03.432 event is. Just because I can't go outside like I 0:25:03.592 --> 0:25:06.752 can go outside, I just have to wear my protective 0:25:06.752 --> 0:25:09.232 hood and you know, protect my skin, and a lot 0:25:09.272 --> 0:25:11.871 of people just make that decision for me, which is 0:25:11.992 --> 0:25:14.672 extremely aggravating, because there are a lot of things that 0:25:14.752 --> 0:25:16.712 you know, I would love to come to your Fourth 0:25:16.712 --> 0:25:19.992 of July barbecue, whatever. It's just sometimes I might have 0:25:20.032 --> 0:25:21.992 to step inside to cool off, or I have to 0:25:22.032 --> 0:25:23.792 wear my hood and that, as you know, that's a 0:25:23.832 --> 0:25:25.871 decision for me to make. It's not a decision for 0:25:25.952 --> 0:25:26.432 you to make. 0:25:27.272 --> 0:25:32.152 Stories like Amy's aren't unusual any more. Not long ago, 0:25:32.352 --> 0:25:36.192 researchers doubted many patients would live to see their thirties. 0:25:36.752 --> 0:25:41.591 With early diagnosis and diligence, many XP patients have a 0:25:41.592 --> 0:25:42.352