In this Born Different special, we meet individuals who suffer from an extremely rare condition which prevents them from being exposed to sunlight.
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00:00 (children cheering)
00:02 - Her first burn happened when she was
00:04 about three and a half months old.
00:06 We were told that she just has sensitive skin
00:09 and never sat right with me.
00:11 - Hands please, chukaboot.
00:12 - Ami and Taya have been diagnosed
00:15 with xeroderma pigmentosum.
00:17 - They're 10,000 times more likely to get skin cancer
00:20 than urethrite and they're 2,000 times more likely
00:23 to get other cancers because their cells
00:26 just don't repair at a DNA level.
00:28 It's a very rare condition.
00:29 - Okay, boys, safe?
00:31 - Yeah, baby!
00:32 - I'm free!
00:34 We get to take off again.
00:38 - Could I please have an almond latte?
00:41 - So when Ami was really young,
00:43 that's when she had her first burn
00:44 at about three and a half months old.
00:46 She didn't settle in the afternoon
00:48 and by that evening, her whole face had puffed up
00:52 and then it was swollen red.
00:54 So we went to emergency.
00:56 They had no idea, didn't really give us any indication
00:59 of what it could be.
01:01 And when we finally had the bad burn at the end of last year,
01:05 Ami's face was red and puffy
01:08 and it would have been two days at school
01:10 that that burn happened over,
01:12 only going outside during lunch and recess.
01:16 And when we got referred to the dermatologist
01:19 who quite quickly said that it was XP,
01:22 there was a hope that there was an answer
01:25 but it was also incredibly confronting
01:28 because it's not the answer that you want it to be.
01:31 - After Ami was diagnosed from the genetic testing,
01:34 we then, Yvette and I and Tayo were tested
01:37 and yes, it confirmed that she had XP,
01:40 same as Ami did.
01:41 - Thank you.
01:42 - It has salt on it.
01:44 - You don't know how to do it!
01:45 - So it's called XPD.
01:47 In essence, their body can't repair the damage
01:51 at a DNA level when their skin is exposed to UV light.
01:55 So here we've got the UV meter,
01:57 which measures very small amounts of UVA and UVB.
02:02 And so when you point it up to the sky,
02:06 you can see it climbing quite quickly.
02:08 So we use this as a very handy tool
02:11 for places that we don't know whether they're safe or not.
02:15 And Ami finds it quite reassuring to be able to check.
02:18 - It's a bit sad that my sisters can't join me
02:21 because, well, they can,
02:24 but it's hard for them to go out for long periods of time.
02:28 - There it is.
02:29 - How cool is that?
02:30 - Hands, please, to the boot.
02:31 There it is.
02:32 - It takes about 10 to 15 minutes
02:34 to get them sort of creamed up properly.
02:36 And then put zinc on her lips.
02:39 So that's just an extra protection for her lips.
02:42 And then the final one is their special hood
02:45 when they go outside and the UV gloves.
02:47 So every bit of skin is completely covered.
02:49 There's nowhere that UV can get to them.
02:51 - We did it!
02:53 - One of the first things we did once we got the diagnosis
02:57 was to make our home safe.
02:58 So we got all the windows in our house tinted,
03:01 every single pane of glass.
03:03 We're 10,000 times more likely to get skin cancer
03:06 than URI, and the 2,000 times more likely
03:09 to get other cancers because the cells
03:12 just don't repair at our DNA level.
03:14 (wind blowing)
03:17 (children cheering)
03:20 - When I first put it on, I was scared,
03:24 but then I got used to it each day.
03:27 And I stayed inside.
03:29 And then when lockdown happened,
03:32 I started going outside 'cause there was less people.
03:35 So I wouldn't be as embarrassed with everyone in front of me.
03:38 And then I was so used to it when everyone came back.
03:41 So my skin doesn't feel as sore if I protect it.
03:46 And it hurts when it burns.
03:48 So at least we've found something to fix it
03:52 and it won't happen anymore.
03:54 - We needed to be 10 or under
03:56 for the girls to take their gear off.
03:58 We're still up in the hundreds.
04:00 - She feels sad when they can't be involved
04:05 in social situations or just pop down to the beach quickly
04:09 for a quick swim.
04:10 You know, it's not a pop down for us.
04:11 It takes quite a bit of preparation to get out of the door.
04:15 - We're at 50 at the moment, still a bit high.
04:17 So I have to wait a bit longer until it's safe.
04:21 Get the girls, head the hoods off and gloves
04:23 and they can go running around, be free.
04:25 Nearly there.
04:27 Okay, everyone, it's safe.
04:33 - Yeah, baby!
04:34 (screaming)
04:35 - Hoods off.
04:36 - Get it off.
04:37 I'm free.
04:39 (screaming)
04:42 - We have to take off our gear.
04:45 - When you see the girls playing together at sunset
04:47 without the gear on, it's just, it's priceless.
04:50 It's also bittersweet that, you know,
04:52 you just wish that they could be like that during the day,
04:54 but they just can't be.
04:55 - Our hopes and dreams for them are that they continue
04:58 with the attitude they have at the moment
05:00 that they're not going to let this stop them.
05:03 And for Nick and I to keep trying to support them
05:06 in that way as well.
05:07 - Yeah, I just want them to have as a normal life
05:10 as possible, really.
05:11 Whether they have to wear a hood and gloves or not,
05:13 you know, so be it.
05:14 But to not let their condition hold them back
05:17 and stop them from doing things they want to do
05:19 and to achieve the dreams and desires
05:21 and hopes that they want to achieve in life.
05:23 - If UV rays touches my skin,
05:35 I burn really bad and then I develop skin cancer.
05:38 - The sun's rays, so often a symbol of health and happiness.
05:53 But for one young woman in this quiet town,
05:56 they're nothing short of deadly.
05:57 - I've had 43 skin cancer surgeries.
06:05 So my last surgery was on Tuesday
06:07 and they found a different type of squamous cell carcinoma
06:12 where it grows really fast.
06:18 And it was like about maybe that big.
06:22 Well, they numb it and then they slice it
06:26 and then they stitched it up.
06:29 - Lizzie was born with a rare condition
06:32 known as xeroderma pigmentosum or XP.
06:36 Her skin is unable to repair its own DNA
06:39 once it's been damaged by the sun's harmful UV rays.
06:43 At home, all the windows have been lined
06:46 with protective filters.
06:47 But it's the outside that presents the biggest danger.
06:52 - Okay, we're getting ready now.
06:58 Every day she's got to put on this sunscreen.
07:01 - For Lizzie, leaving the house is a huge ordeal
07:04 as even the tiniest gap in her clothing
07:06 could allow UV rays through and prove catastrophic.
07:09 - Jeans are the best that have the tightest weave.
07:14 And so she's got her jeans on.
07:17 She's got her gloves.
07:18 She likes those that she can text with, of course.
07:22 And this meter shows the amount of ultraviolet rays.
07:27 Of course, inside it's at zero,
07:29 but outside it turns to like 1,600.
07:33 Lizzie is supposed to be under 10.
07:36 - Lizzie's mom had noticed the signs of XP
07:39 sometime before she was able to give it a name.
07:43 - When she was six weeks old,
07:45 about 30 minutes in the park, and we came home,
07:48 the next morning her eyes were swollen shut,
07:52 her face was red, and we rushed to the doctor.
07:57 Unfortunately, XP is so rare
08:00 that a lot of doctors don't know about it.
08:02 And so he just thought,
08:03 "Oh, well, I guess she just got a little too much sun."
08:08 - For years after, Lizzie and her family
08:10 were completely unaware
08:11 she had a potentially fatal genetic disorder.
08:14 - She lived a very normal life,
08:17 except for all her burning.
08:19 The sunburns that she would get
08:22 would make her skin look pretty bad.
08:27 She tops it all off with this hood.
08:29 So, just gonna put her hood.
08:35 And so she's covered head to toe and ready to go outside.
08:40 Oh, don't forget your meter.
08:42 - It wasn't until Lizzie was 12
08:44 that a local doctor shed light on her condition.
08:47 - I found two sores on my face that would not go away.
08:51 So I went to a dermatologist and they said,
08:54 "Oh, that's cancer."
08:56 - Remarkably, the doctor happened to be
08:58 one of the few XP experts in the world.
09:01 - I had actually seen a lot of cases of XP.
09:03 So I, of course, thought of that first thing
09:06 when I saw Lizzie.
09:07 Whereas I think someone who had not had that perspective
09:10 probably wouldn't even have suspected it.
09:13 The dangers of XP include the development
09:16 of multiple skin cancers
09:18 and other problems such as neurological problems
09:22 and developmental problems.
09:24 The diagnosis completely changed the way
09:26 that Lizzie had to live her life.
09:28 Do you have your meter, Lizzie?
09:30 - Yeah.
09:31 - Okay.
09:31 On a typical cloudy day, the meter runs about,
09:35 hey, three to 400.
09:39 But on a super sunny day,
09:41 it runs 1600.
09:45 It goes on and off.
09:48 Let me see that.
09:49 This is...
09:50 - So it's within...
09:51 - It's within a hundred.
09:53 - So it's within 400 right now.
09:56 And now inside the hat, it's only in 10,
09:59 or nine.
10:01 So it does really help.
10:03 So I feel actually pretty safe.
10:05 In the very beginning, I felt sad when they said,
10:11 "Please don't stare at me.
10:13 I'm just a normal person."
10:15 I felt kind of sad, upset.
10:18 I still get remarks from people saying,
10:21 "Why does that girl have a bag on her head?"
10:24 Are you a space mutant?
10:28 Hey, are you a beekeeper?
10:30 Are you from outer space?
10:32 So I explain to them what it is,
10:34 because I want people to have a knowledge of XP.
10:38 - Lizzie is a real champion, I think,
10:41 when it comes to her diagnosis with XP.
10:45 She really is upbeat about it.
10:48 - I think I am positive because I have a great big family.
10:52 I have five brothers, I have two sisters,
10:55 20 nieces and nephews.
10:57 XP in the US affects one in one million people.
11:04 What's rarer still is having two instances of it
11:07 in the same family.
11:08 My niece has XP.
11:15 She's seven.
11:17 (gentle music)
11:20 When my daughter was first diagnosed with XP,
11:28 she was just one year old.
11:30 She had a really bad sunburn,
11:32 and we took her to a doctor who recognized it,
11:34 thanks to my sister.
11:37 Even with having XP in the family, we were still shocked.
11:41 I'm really grateful for my sister, Lizzie,
11:44 and the example she's been to my daughter,
11:48 and she's kind of a hero to her.
11:50 - And Lizzie's niece isn't her only fan.
11:52 - She is really outgoing,
11:59 and she just loves everyone that she meets.
12:03 - So I could pretty much walk to anyone,
12:05 and they'll say, "Oh, Lizzie, I'm one of your friends.
12:09 "It was so fun to be around."
12:11 - She doesn't let her XP control her.
12:15 - She's just the funniest girl I've ever met.
12:17 - She just loves life.
12:21 - A message that I would like to share with people.
12:25 Just know that you are here on Earth,
12:29 and just be happy, make new friends,
12:33 and have a positive attitude no matter what you deal with.
12:37 (upbeat music)
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12:42 (upbeat music)
12:45 (sad music)
12:47 (speaking in foreign language)
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13:07 (speaking in foreign language)
13:10 (sad music)
13:22 (speaking in foreign language)
13:29 (speaking in foreign language)
13:33 - Xeroderma pigmentosum is a rare genetic condition
13:57 that causes extreme sensitivity to the sunlight.
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14:55 - Among the many operations Karina's had to have
14:57 because of her condition,
14:59 this included procedures to remove her lower lip
15:02 and the tip of her nose due to melanomas.
15:05 (speaking in foreign language)
15:09 (speaking in foreign language)
15:13 - Due to Karina's condition,
15:37 she has to avoid being out in the sun as much as possible,
15:41 meaning most days she has to stay indoors
15:44 with the curtains closed.
15:46 Otherwise, the effects of her condition
15:49 could continue to get even more extreme.
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16:46 (speaking in foreign language)
16:50 - After recovering from the surgery
17:14 to remove the cancer from her skull,
17:16 Karina realized people had donated more
17:19 than she needed for her treatment.
17:20 (speaking in foreign language)
17:25 (speaking in foreign language)
17:29 - Through Karina's social media presence
17:52 documenting her journey with xeroderma pigmentosum,
17:56 she met Ed, who saw her story
17:58 and reached out to her through Facebook.
18:01 When Karina and Ed started posting
18:03 about their relationship on social media,
18:06 they received a lot of negative reactions
18:08 from people who didn't believe they were a real couple.
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18:56 (upbeat music)
18:58 Despite all the hardship she faces due to her condition,
19:04 Karina and Ed make the most of the life
19:06 they are able to lead with one another.
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19:37 (upbeat music)
19:40 (upbeat music)
19:42 [BLANK_AUDIO]