We Are Allergic To Sunlight | BORN DIFFERENT

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  • เผยแพร่เมื่อ 31 ธ.ค. 2024

ความคิดเห็น • 326

  • @Vangerlena10
    @Vangerlena10 ปีที่แล้ว +872

    I love how happy their brother was about them taking off their gear on the beach at sunset. This condition affected the whole family.

    • @survivingitall5263
      @survivingitall5263 ปีที่แล้ว +17

      I just came here to type this exact thing!!!

    • @manderly109
      @manderly109 ปีที่แล้ว +9

      It was very sweet. ❤

    • @nekojojo8393
      @nekojojo8393 ปีที่แล้ว +5

      I was about to say the same 🥺 so cute ❤

    • @Onnlen
      @Onnlen ปีที่แล้ว +5

      Not gonna lie it made me cry.

    • @Kaykayedits579
      @Kaykayedits579 ปีที่แล้ว +2

      @@Onnlenaww❤😢

  • @IAmSuzyQ
    @IAmSuzyQ ปีที่แล้ว +613

    Disney World does something special for kids with XP. They open the park all night so these kids get to experience Disney World without having to wear all that gear, or the risk of injury from the sun. I thought that was so cool!

    • @RoseNZieg
      @RoseNZieg ปีที่แล้ว +9

      I always assume they open night and day.

    • @christenbowen437
      @christenbowen437 ปีที่แล้ว +25

      @@RoseNZiegmost of the time I know Floridas park closes at 10pm

    • @annthomas6658
      @annthomas6658 ปีที่แล้ว +5

      Thanks for info

    • @HMMC101
      @HMMC101 ปีที่แล้ว +14

      Wow! That’s really amazing. Regardless of the reason they are open, it’s wonderful for these kids to have some normality and get to enjoy something fun with their gear off. So strange that it only affected the girls! What a kind family ❤😢

    • @Nafretiti85
      @Nafretiti85 8 หลายเดือนก่อน

      That's different than this..@matt5539

  • @Rockas360
    @Rockas360 ปีที่แล้ว +271

    These are the most healthy XP kids I've ever seen. Good on the parents on being proactive in adjusting their schedule and activties and getting the answers.

  • @sarahanngreenwell
    @sarahanngreenwell ปีที่แล้ว +310

    I feel so sorry for anyone having to deal with this. You are all warriors!!

    • @khonkhosilelihle7414
      @khonkhosilelihle7414 ปีที่แล้ว +1

      True ey.

    • @heatherlyons4840
      @heatherlyons4840 ปีที่แล้ว +6

      They are making things much worse than what it really is. I have this problem and as long as you have a baseball hat on with sunglasses and you keep a long sleeve shirt and keep your hands covered then your fine

    • @daniellewoodley3
      @daniellewoodley3 ปีที่แล้ว +2

      A girl I tan track with had this disorder, and she didn’t use a whole set like these girls, just lots of sunscreen and longer sleeves. Idk if it’s different levels, but ppl should be able to live fairly normal lives.

    • @imanrusmana-gp9zf
      @imanrusmana-gp9zf ปีที่แล้ว

      You're beautiful. I like white women and blue eyes. But I can't speak English, I use my Google translate people
      INDONESIA
      💘💘😊💕😁😊❤❤

    • @Pack_Watch
      @Pack_Watch ปีที่แล้ว

      You know they exaggerated this for the video right?? 😂😂

  • @terriandlola
    @terriandlola ปีที่แล้ว +113

    Come to the UK! Sun hates us. In all seriousness, this condition must be an absolute pain to deal with! They are obviously doing an amazing job with how happy the kids are

    • @mignonpeens
      @mignonpeens 2 หลายเดือนก่อน

      It is. I have it. I sleep during the day now

  • @thryssinstitches9655
    @thryssinstitches9655 ปีที่แล้ว +191

    I'm albino and I think these sweet gals possibly burn worse then me. Never thought I'd see the day. Bless them

    • @AshCupric
      @AshCupric ปีที่แล้ว +8

      Thryss, you are absolutely beautiful!

    • @imanrusmana-gp9zf
      @imanrusmana-gp9zf ปีที่แล้ว +2

      You're beautiful. I like white women and blue eyes. But I can't speak English, I use my Google translate people
      INDONESIA
      💘💘💘💘😂😅😂☺☺😍

    • @ChallieWallie
      @ChallieWallie 9 หลายเดือนก่อน +4

      I think albinos would get sunburn faster, but their skin recovers and heals itself.
      For XP patients, their skin doesnt repair itself properly so the consequences are much bigger.

    • @bellarose8630
      @bellarose8630 9 หลายเดือนก่อน +2

      @@imanrusmana-gp9zfalbino doesn’t mean white. It means lack of pigment. U can be black and albino lmao and they also don’t have blue eyes either

    • @doomhuntress886gaming
      @doomhuntress886gaming 9 หลายเดือนก่อน +3

      @@bellarose8630
      They more often then not have blue eyes. It's uncommon to see Albinism in humans without blue eyes

  • @makaylaandhenry9160
    @makaylaandhenry9160 ปีที่แล้ว +240

    It's sad to think that if the last lady had the creams and special gear and monitor like the other families her health probably wouldn't be as bad

    • @latonyanewsome0
      @latonyanewsome0 10 หลายเดือนก่อน +13

      I was thinking the same thing. The first 4 look completely fine.

    • @ChallieWallie
      @ChallieWallie 9 หลายเดือนก่อน +35

      Special gear would be better, but she could wear regular long sleeved shirts and a hat to block most of the rays.
      Walking in around in the sunset with nothing more than a sleeve less summerdress and flipflops is not exactly what i would consider 'taking extra precaution'.
      I am afraid that in her case, its more a matter of lack of knowledge and understanding.

    • @caroldannenberg9778
      @caroldannenberg9778 7 หลายเดือนก่อน

      @@ChallieWallie , she said she also uses sunscreen for the exposed parts of her body. It's very hot in Brasil, unlike the other countries shown.

    • @ChallieWallie
      @ChallieWallie 7 หลายเดือนก่อน +3

      @@caroldannenberg9778 but sunblock only reduces part of certain rays. In her case, it won't help at all.

    • @KismetandKarma
      @KismetandKarma 4 หลายเดือนก่อน

      ​@@ChallieWallie no, that's a cop out. XP diagnosis at 3 they would of been told what not to do. She knows what not to do as I can bet her doctors ha e told her time and again. Brazil isn't some 3rd world hell hole.

  • @Sharon_L_W
    @Sharon_L_W ปีที่แล้ว +31

    As someone in Sydney, Australia.. their lives would be even harder than it looks in this video. We’re in the middle of our winter at the moment and it’s still so sunny, my house turns into an oven in the daytime (30+ degrees C) even if the temperature outside isn’t warm. Living here and having to avoid UV would be unimaginable.

  • @shelleyzillerr
    @shelleyzillerr ปีที่แล้ว +52

    feel like moving to a place where the uv index typically stays at whatever level is safe would be the best thing to do, obviously if financially capable

    • @learntolearnl2l
      @learntolearnl2l 3 หลายเดือนก่อน

      that is not possible. they get burned with any uv index that is slightly above 0.

  • @jbellfield
    @jbellfield ปีที่แล้ว +130

    With that skin cancer risk I'd be trying my best to get out of Australia.

    • @dovestone_
      @dovestone_ ปีที่แล้ว +7

      True

    • @xirisx1988
      @xirisx1988 ปีที่แล้ว +11

      If that was an option they would've moved already.

    • @khonkhosilelihle7414
      @khonkhosilelihle7414 ปีที่แล้ว

      Is the country too hot?

    • @khonkhosilelihle7414
      @khonkhosilelihle7414 ปีที่แล้ว +6

      ​@@xirisx1988 Maybe it is but there are factors that make them not to be able to move.

    • @Cloudkirb
      @Cloudkirb ปีที่แล้ว +5

      ​@@khonkhosilelihle7414 yes, especially in summer

  • @l.pmoonstone5067
    @l.pmoonstone5067 ปีที่แล้ว +192

    Moving somewhere with more of a cloudy climate would give the entire family a better quality of life and wouldn’t have to worry about cancers as much

    • @khonkhosilelihle7414
      @khonkhosilelihle7414 ปีที่แล้ว +12

      I second that.

    • @l.pmoonstone5067
      @l.pmoonstone5067 ปีที่แล้ว +57

      @@khonkhosilelihle7414 living in Australia of all places too, one of the hottest climates on the planet, must be torturous for those children.

    • @FLMegan
      @FLMegan ปีที่แล้ว +6

      Yes great idea

    • @ashleyplace7395
      @ashleyplace7395 ปีที่แล้ว +12

      Even in a climate with more clouds you are not safe. I’ve gotten a nasty cloud burn in San Francisco while walking the Golden Gate Bridge. I don’t have XP so I can’t imagine what would happen to someone with it.

    • @l.pmoonstone5067
      @l.pmoonstone5067 ปีที่แล้ว +10

      @@ashleyplace7395 I have lived in places like Seattle, and other places with a dry hot desert climate and it’s like night and day. No comparison there. The family would benefit moving to a northern climate. Hands down, would absolutely be safer for their children.

  • @islandnightowl
    @islandnightowl ปีที่แล้ว +43

    There is a family with the same condition who moved to Prince Rupert BC Canada because it is the area that has the least sun exposure.

  • @dduffee64
    @dduffee64 ปีที่แล้ว +83

    We are allergic to sunlight. Camerman: let's go outside and take a picture for the thumbnail

  • @Bot-tm7hs
    @Bot-tm7hs ปีที่แล้ว +53

    as for the last lady, why does she not take more precautions? When they showed her outside at the end with bare arms I was confused.

    • @pamcarter3133
      @pamcarter3133 8 หลายเดือนก่อน +7

      Can't believe that no one has mentioned the UV hats or meters before she started developing tumors that cost her body parts.

    • @caroldannenberg9778
      @caroldannenberg9778 7 หลายเดือนก่อน

      She said she uses sunscreen.

    • @Edriella
      @Edriella 4 หลายเดือนก่อน +2

      @@caroldannenberg9778 Yea the others wouldn't wear so much of special UV protective gear if sunscreen was all that it takes to be safe.

    • @learntolearnl2l
      @learntolearnl2l 3 หลายเดือนก่อน

      @@caroldannenberg9778 sunscreen is not enough. it only blocks a few of the uv. u need clothes and only go out after 4 pm.

    • @mignonpeens
      @mignonpeens 2 หลายเดือนก่อน

      It made me mad. I would never go in the sun like that. That’s why she looks so bad

  • @user-hn6sk5fw4g
    @user-hn6sk5fw4g ปีที่แล้ว +18

    There was a true-life movie done in the late 70's or early 80's about a family with 2 girls that had this condition. I wish I could remember the name of the movie. It was well done and you could feel for the family and what they had to go through.

    • @malloryknox1637
      @malloryknox1637 ปีที่แล้ว +5

      Children of the dark.

    • @mikimisteinberg4016
      @mikimisteinberg4016 9 หลายเดือนก่อน +1

      Almost word for word what u was going to say; ahout there having been a true-life movie about a family w the two girls sick w XP and an older brother from an earlier marriage if I'm not mistaken.
      The girls would have ballet or dance party/performance in their backyard after it was dark for their neighbors.
      I think for thst that family, XP was still a new medical diagnosis and not yet recognized, and if memory serves me well, their ped at first thought that they had left their children out in the sun too long as one girl was very young and blister-burned from the sun.

  • @kelligray1848
    @kelligray1848 8 หลายเดือนก่อน +5

    I blister in any light due to my autoimmune diseases. I can’t imagine going through it as a kid, bless their hearts!

  • @glorious8477
    @glorious8477 ปีที่แล้ว +25

    im so sorry, they are adorable children.

  • @Mandy-rx7rq
    @Mandy-rx7rq ปีที่แล้ว +29

    Bless them girls. I wish one day there would be science to help them go out into the sun without burning x

  • @Br0th3r7
    @Br0th3r7 ปีที่แล้ว +27

    For people with XP, they look really good! They barely have any moles! (apart from the woman from brazil)

    • @apara2005
      @apara2005 ปีที่แล้ว +20

      Because of their parents quick intervention with the protective gear/precautions. Unfortunately, seem like the Brazilian woman didn't have this.

    • @latonyanewsome0
      @latonyanewsome0 10 หลายเดือนก่อน

      ​@@apara2005Exactly!

  • @christineb1464
    @christineb1464 ปีที่แล้ว +32

    That last woman needs some better UV protective gear.

  • @silverdoe9477
    @silverdoe9477 ปีที่แล้ว +87

    Australia would be the last place I’d raise kids with this diagnosis. Of course many can’t move suddenly, but they really should make it a priority.

    • @latonyanewsome0
      @latonyanewsome0 10 หลายเดือนก่อน +3

      Agreed!

    • @Darby0642
      @Darby0642 9 หลายเดือนก่อน

      The world is full of uv light. It doesn’t matter whether they live in Australia or the arctic. Even the type of lighting in their house can damage their cells. Moving wouldn’t solve anything.

    • @lottie-jeancustance9751
      @lottie-jeancustance9751 8 หลายเดือนก่อน +5

      UV light is everywhere. It also penetrates clouds. Doesn’t really matter where they live.

    • @mintyxx1
      @mintyxx1 8 หลายเดือนก่อน +1

      Why? Southern Hemisphere has less daylight than the Northern Hemisphere. It's not how "sunny" it is. It's a matter of how much "daylight" there is, and the Southern Hemisphere gets several days' worth LESS than the Northern Hemisphere.

    • @belindakelly749
      @belindakelly749 8 หลายเดือนก่อน

      Australia is one of the best countries in the world in terms of healthcare and opportunities and they’ve made a lot of changes to adapt

  • @annekabrimhall1059
    @annekabrimhall1059 9 หลายเดือนก่อน +3

    My skin is very sensitive to the sun and it causes pain. These brave souls help me cope with it! I wear color changing shirts and glasses to alert me when the sun is on me.

  • @jemma-joon
    @jemma-joon ปีที่แล้ว +20

    So sorry for them, beautiful little girls, i hope they find a cure ❤️

  • @f.l3450
    @f.l3450 ปีที่แล้ว +20

    Your kids are beautiful and kind, wishing the best to your family.

  • @pattyfluegel7816
    @pattyfluegel7816 ปีที่แล้ว +27

    the last person seems ill advised to go out for walks in the sun like that. just go for a moonlit walk eh?

  • @sharonhill2602
    @sharonhill2602 ปีที่แล้ว +20

    Being in one of the sunniest countries too, they are very happy children

  • @_VC._
    @_VC._ ปีที่แล้ว +23

    👵Back when I was in high school, there was a girl who was allergic to the sun. She had to wear a GAP fleece hoodie and gloves all summer! 🥵

  • @koridigman510
    @koridigman510 ปีที่แล้ว +16

    Beautiful family. So much strength and positivity

  • @ElvenSailor_Main
    @ElvenSailor_Main ปีที่แล้ว +32

    Wait so the last woman goes outside anyway? Without covering?

    • @khonkhosilelihle7414
      @khonkhosilelihle7414 ปีที่แล้ว +15

      Imagine wow. No wonder she looks like that.

    • @mignonpeens
      @mignonpeens 2 หลายเดือนก่อน

      Ja now u understand why she looks like that

  • @Holly.Georgia
    @Holly.Georgia 8 หลายเดือนก่อน +3

    I live in Australia and I couldn’t imagine not being able to go into the sun. I would consider living somewhere less sunny 24/7 like the UK.

  • @deborahwinberg4907
    @deborahwinberg4907 ปีที่แล้ว +16

    And they live in australia as well :( that’s tough

  • @learntolearnl2l
    @learntolearnl2l 3 หลายเดือนก่อน

    the kids from the first video, they were unlucky to have this condition, but so lucky to have that lovely family. they made me cry. they love each other so much and they are so happy. I wish every kid could have a family like that. the world would be such a better place.

  • @sweetafr7820
    @sweetafr7820 ปีที่แล้ว +6

    I know how they feel that can be a little bit sad because they can do a lot in the morning and mostly they do some at sundown but they look so happy and have a loving and sweet family

  • @wkdgrneyes
    @wkdgrneyes ปีที่แล้ว +12

    Northern Europe or northern US might be quite pleasant for them

  • @rubyruby147
    @rubyruby147 ปีที่แล้ว +5

    Salute to this parents who protect and love their children 🤚🏻🤚🏻💕

  • @SamanthaMoody-w2g
    @SamanthaMoody-w2g 7 หลายเดือนก่อน +1

    My mother-in-law around the foundation in the united states called the HED foundation, which then turned into the Sarah Moody foundation. She created a suit for children who were born without sweat glands through the help of NASA she then went on to develop a suit for children who are allergic to the sun as she traveled all over the world, presenting these suits to different children. Sadly, she passed away many years ago, and we were unable to keep the foundation going, as it was a nonprofit, Sarah had Sarah was an incredibly special person her fight to make sure these children were taken care of was nonstop. I think about the children today that grew out of their suits. It makes me sad to think that possibly they cannot go out in the sun anymore or have the dangers of overheating, because the cool Suit no longer fits them

  • @KP-nx8lo
    @KP-nx8lo 8 หลายเดือนก่อน +4

    Never come to Alaska in the summer! We get 20hrs of sun a day, some places the sun never sets.

  • @flowmovementtherapy2096
    @flowmovementtherapy2096 11 หลายเดือนก่อน +2

    I recall a story of a family with likely the same diagnosis who were looking to move to the town with the least sunlight all year round. They chose Prince Rupert, BC which locals know is the cloudiest place we can think of.

  • @laurenschenck5355
    @laurenschenck5355 ปีที่แล้ว +10

    Incredible family and so strong and strength and amazing and unbelievable positive and love there confidence and course and encouragement ❤

  • @patienceacheampong9542
    @patienceacheampong9542 ปีที่แล้ว +10

    The third one is quite disturbing. Hope she gets help.

  • @angela.b.
    @angela.b. 8 หลายเดือนก่อน +1

    A reminder to not take anything for granted. Even what we’d define as the little things.

  • @earthscorcher
    @earthscorcher 2 หลายเดือนก่อน

    Lizzie seems like sweetest soul ever 😭

  • @mompreneurlife
    @mompreneurlife ปีที่แล้ว +16

    ❤They should move to Forks, WA.❤

  • @annieG85
    @annieG85 ปีที่แล้ว +35

    Wondering why the last woman didn’t cover her self in the sun.

  • @Mecca4k
    @Mecca4k ปีที่แล้ว +16

    If I was them I would tell all my friends that ima a real life vampire 🧛‍♀️ 😂💪🏽😂

  • @stardoll1995
    @stardoll1995 3 หลายเดือนก่อน

    Having XP in Brasil would be CRAZY with the level of sun exposure they have out there also it's so sad they didn't know what it was early enough for her to have help in time to avoid the amount of damage she sustained on her skin.

  • @thryssinstitches9655
    @thryssinstitches9655 ปีที่แล้ว +17

    I'd love to know what sunblock they use for their girls. I'm albino and after the U.S changed the way they do sunblock I burn through it now

    • @Cherrielou
      @Cherrielou ปีที่แล้ว +4

      Try get from Asia they got good ones

  • @YayaSlatt
    @YayaSlatt 9 หลายเดือนก่อน +2

    I had sensitive skin and I was allergic to the sun and anytime I go out in the sun my face would be red and rashes was all over my body and I would look like a balloon and would have to take a oatmeal bath and use different soap now when I get in hot heat or the sun I would get sick throw up get light headed and weak I’m sorry you have to go through this sis you girls is strong 💗.

  • @mybrokenmindddd
    @mybrokenmindddd ปีที่แล้ว +22

    Wow! All of them!😳 Thank you for spreading awareness. Hope you guys find an answer to where you can't go in the sun again

  • @AcidOnTheStreet
    @AcidOnTheStreet ปีที่แล้ว +16

    Should come to Sweden, no sunlight here lmao

  • @alexdenton6586
    @alexdenton6586 หลายเดือนก่อน +1

    No doctors bothered to check the most probable explanation ? Everybody knows vampires can’t go out in the sun 🌞

  • @teebanksy2252
    @teebanksy2252 ปีที่แล้ว +5

    The Bluey hats are so cute!

  • @ultrasonicradiation
    @ultrasonicradiation ปีที่แล้ว +20

    They should consider moving to Norway or Sweden. Living in Australia with this skin condition is not smart.

    • @AJBlueJay
      @AJBlueJay ปีที่แล้ว +5

      Or, Russia, Alaska, Canada...

    • @ultrasonicradiation
      @ultrasonicradiation ปีที่แล้ว +3

      @@AJBlueJay who would want to move to Russia or Alaska?

    • @pegs1659
      @pegs1659 ปีที่แล้ว +3

      Maybe you could help finance a move like that for them?

    • @ultrasonicradiation
      @ultrasonicradiation ปีที่แล้ว

      @@pegs1659 They can start a Go-Fund-Me page. Maybe you can do it for them.

    • @how-to-live-right
      @how-to-live-right ปีที่แล้ว +1

      @@ultrasonicradiation whats wrong with alaska?

  • @tillydog
    @tillydog 8 หลายเดือนก่อน +1

    I don't have XP but I do have SLE and am affected by the sun. I feel for these girls.

  • @Jenn_Garrison0505
    @Jenn_Garrison0505 ปีที่แล้ว +4

    Thank you for the video. Your girls are awesome.

  • @abc_cba
    @abc_cba ปีที่แล้ว +35

    Reminded me of that horror film in which Nicole Kidman has a child who is allergic to sunlight, the climax was unexpected ! Loved that film (forgot its name)

    • @gwenx4400
      @gwenx4400 ปีที่แล้ว +9

      The Others!
      Yes that movie is good, I saw it again last week

    • @khonkhosilelihle7414
      @khonkhosilelihle7414 ปีที่แล้ว +3

      I was curious up until I saw that's it's a horror film and I'm like, oh hell no, good I aint gonna watch it.

    • @gwenx4400
      @gwenx4400 ปีที่แล้ว +1

      @@khonkhosilelihle7414 it’s not too bad at all! It says it’s horror but honestly I disagree on that, it’s really not that scary 😊

    • @nonacee5065
      @nonacee5065 ปีที่แล้ว

      Brad pitt did one called Dark side of the Sun. Where he is allergic to the sun.

  • @sharonhill2602
    @sharonhill2602 ปีที่แล้ว +14

    Such brave people

  • @katkk4096
    @katkk4096 ปีที่แล้ว +5

    God Bless their Family🙏💖.

  • @meghanh2511
    @meghanh2511 ปีที่แล้ว +11

    Poor girls must get so hot, living in Australia and having to cover up just to go outside.

  • @katryanaorange2092
    @katryanaorange2092 ปีที่แล้ว +6

    Such a cute family, I wish them the best!

  • @chaosologist
    @chaosologist ปีที่แล้ว +11

    I've heard of the condition and watched movie where the main character has it as well. It called Midnight Sun

  • @karimah3462
    @karimah3462 9 หลายเดือนก่อน +3

    If I had children who had this, I would probably move to a country with the lowest uv levels like Iceland? So that they can live as free as possible always.
    My heart goes out to them all ❤

    • @justmejenny7986
      @justmejenny7986 9 หลายเดือนก่อน +2

      UV still comes through.

  • @SukiLovesAM
    @SukiLovesAM ปีที่แล้ว +5

    The bluey hats 😭 so jealous

  • @jrsixowfour8674
    @jrsixowfour8674 ปีที่แล้ว +14

    Aww this is so sad

  • @clairemetcalfe6850
    @clairemetcalfe6850 ปีที่แล้ว +6

    Perfect future candidates for working the night shift at work

  • @leticiabincoletto8166
    @leticiabincoletto8166 ปีที่แล้ว +19

    Why the Brasilian girl continues to expose herself in the sun? 😰, I don't understand...

    • @theopulentone1650
      @theopulentone1650 ปีที่แล้ว +12

      Her parents possibly didnt know what was wrong with her or couldn't afford medical treatment before the damage was done. Google images shows how bad this condition can get in warmer more impoverished climates.

    • @leticiabincoletto8166
      @leticiabincoletto8166 ปีที่แล้ว +13

      @@theopulentone1650 yes, but she being an adult doesn't thing that taking pictures outdoor was dangerous? her boyfriend didn't thing about that either... It was surprising

    • @IguanaMom
      @IguanaMom ปีที่แล้ว +16

      ​@@leticiabincoletto8166 seriously! She's walking around in a sun dress. Maybe she should have used some of the money she got to buy some of the headgear and that that the others were wearing.

    • @JoelleJay
      @JoelleJay ปีที่แล้ว +8

      @@theopulentone1650 the video says she was diagnosed at 2 years old. Either her case is exceptionally severe/comorbid with other syndromes (depending on the mutation she might be hypersensitive to other environmental triggers like certain chemicals), or she's had a lifetime of negligent care.

    • @caroldannenberg9778
      @caroldannenberg9778 7 หลายเดือนก่อน

      @@IguanaMom She said she uses sunscreen. Am I the only one who was listening to the audio?

  • @theunforgiven2885
    @theunforgiven2885 ปีที่แล้ว +12

    How scary for the parents and children .More likely to get different cancers not just skin .Bless them 🙏😔❤️Love there love for life. I pray they have long healthy Lifes.These are the stories that I enjoy on this channel .Lizzie rocks can't for get her

  • @ConcreteAngelx3
    @ConcreteAngelx3 ปีที่แล้ว +2

    This disorder always makes me think of The Others

  • @debrarouselle9761
    @debrarouselle9761 9 หลายเดือนก่อน

    Our neighborhad this issue and she also couldn’t be under certain lighting, she used wide brim hats, long sleeves etc etc..

  • @creativechik
    @creativechik ปีที่แล้ว +8

    I've seen this video before. A few years ago. It would be nice to see an update.
    Ah....I see this is a combo of people with a similar condition....

  • @feliciafelicia6965
    @feliciafelicia6965 ปีที่แล้ว +10

    Why not move to a colder climate? Less rays there.

    • @cynthiap5266
      @cynthiap5266 ปีที่แล้ว +6

      I thought that too, but honestly it is not always easy to pack up lives and move. They adjust the best they could there

    • @lailaalanna315
      @lailaalanna315 10 หลายเดือนก่อน

      I agree. I'd have left already. It May not be easy to pack up and leave ,but it would be worse if they get sick 😢

  • @cindywhite8612
    @cindywhite8612 ปีที่แล้ว +7

    If the parents has the disease, why would you want to put the kids through it? That's the sad 3

    • @nadjawrona9884
      @nadjawrona9884 ปีที่แล้ว +6

      they don't have it... at least in the first two families

    • @lailaalanna315
      @lailaalanna315 10 หลายเดือนก่อน +1

      I was also wondering how come they kept going after the diagnosis 😢

  • @alexeome
    @alexeome 8 หลายเดือนก่อน +3

    sleep during the day, stay awake at night

  • @Lynn-by7mj
    @Lynn-by7mj ปีที่แล้ว +4

    Could someone tell me a good Uva/Uvb handheld reader like they have and where to get it? I don't have the same type of condition but I do have a skin allergy to UV light and struggle with it daily. Especially because my condition was discovered after we moved to Florida.

  • @Dwainecurtis2001
    @Dwainecurtis2001 ปีที่แล้ว +6

    Brave people 👍

  • @mistytaylor8166
    @mistytaylor8166 9 หลายเดือนก่อน +1

    I feel most for the last woman, but i wonder why she isn't wearing the protective hat that the rest of them had and also why she isn't covering up her skin when outside. I would be protecting what little I had left.

  • @He4rts_f0rRia
    @He4rts_f0rRia ปีที่แล้ว +2

    Tbh I am allergic to sunlight as well I just need to wear sunscreens bc it’s my allergy is pretty mild

  • @latonyanewsome0
    @latonyanewsome0 10 หลายเดือนก่อน +3

    I don't understand why the last girl's is so bad. It's like she didn't get the treatment necessary and had severally damaged her skin. The four prior people looked fine.

    • @rachaelcameron1542
      @rachaelcameron1542 8 หลายเดือนก่อน +1

      Education and money. First two families had access to way more

    • @KismetandKarma
      @KismetandKarma 4 หลายเดือนก่อน

      ​@@rachaelcameron1542No. They just didn't care to follow the advice. XP diagnosis at 3, they would of been told what to do. They and now her, refuse to do it.

  • @eloquentia7207
    @eloquentia7207 8 หลายเดือนก่อน +2

    Wow! And they live in Australia...

  • @xenthosbobo
    @xenthosbobo 7 หลายเดือนก่อน

    i have cold urticaria..... do i do understand the condition in a different way....i am allergic to the cold...... the world seems enjoy a temperature of 70-75° while i am freezing at those temperatures.... it makes life hard, but i can't even imagine what it is like to be allergic to the sun, water, ect. like others have to deal with.....i hope everyone with the rare conditions have a great life despite the hardships.....please keep striving :)

  • @crazyfaith77
    @crazyfaith77 16 วันที่ผ่านมา

    Alaska would be a great place. Our a cloudy area. But with the environment issues no place is safe from the sun.

  • @Andizu1
    @Andizu1 10 หลายเดือนก่อน +5

    Being allergic to sunlight and living in Australia 😭

  • @BCSchmerker
    @BCSchmerker ปีที่แล้ว +5

    +barcroftmedia *_Xeroderma pigmentosum_** is no joke. Melanoma is the tip o' the proverbial iceberg.* Adverse neurology is all too common in this recessive-genetic syndrome.

  • @CathieCookHase
    @CathieCookHase 9 หลายเดือนก่อน

    Ya'll are awesome parents.

  • @heather5281
    @heather5281 8 หลายเดือนก่อน +1

    Aww God Bless Them!

  • @pattyfluegel7816
    @pattyfluegel7816 ปีที่แล้ว +4

    I would make hat brim a bit further out in front to keep plastic off your face.

  • @Mario87456
    @Mario87456 2 หลายเดือนก่อน

    If I had a condition where I couldn’t be exposed to sunlight I would probably stay inside all day. And I usually stay inside anyway for reasons like the heat and preferring indoor actives like video games. Why do these conditions where you have to avoid the sunlight never seem to affect those that don’t like going out anyway? It’s not a condition anybody would want of course but I am just saying they probably wouldn’t be as bothered by it.

  • @Makeachange...
    @Makeachange... 10 หลายเดือนก่อน +3

    Dear Lord, please find a closer cure for XP, give them better gear, protect them from cancers and make sure to surround them with loving support and understanding for others looking in and for the families. Amen❤

    • @KismetandKarma
      @KismetandKarma 4 หลายเดือนก่อน

      There will never be a cure or even hard research I to XP be a use it is rare and there is no money in it. Why would they cure things and cut off their customer base?

  • @Justthatgirlish
    @Justthatgirlish ปีที่แล้ว +4

    I’m curious why the Brazilian lady at the end seems much worse than the other girls in this vid?

    • @ameliabraithwaite3403
      @ameliabraithwaite3403 ปีที่แล้ว +10

      Because she hasn't covered her body like the others have for all those years

  • @catbeara
    @catbeara 9 หลายเดือนก่อน +1

    And living in Australia, that's tough. 😩

  • @eunaekim9216
    @eunaekim9216 ปีที่แล้ว +7

    At least they live in Australia, where kids frequently have to wear a hat when they go to school!

  • @alicesacco9329
    @alicesacco9329 8 หลายเดือนก่อน +3

    They can go out in daytime when cloudy? There are some that can't even bear artificial light

  • @gyselle.gica77
    @gyselle.gica77 ปีที่แล้ว

    I understand you!

  • @nzushie
    @nzushie 9 หลายเดือนก่อน +1

    They should move to Scotland!

  • @sebastien4908
    @sebastien4908 ปีที่แล้ว +1

    If this was Victorian Era Europe they would be staked for being vampires lol

  • @jennadimuccio4787
    @jennadimuccio4787 7 หลายเดือนก่อน +1

    You should move somewhere like Seattle.

  • @SydMountaineer
    @SydMountaineer ปีที่แล้ว +1

    So, they can’t be around a lot of lights inside of buildings, either. Wow!

  • @kandiceblu1
    @kandiceblu1 6 หลายเดือนก่อน

    They need to move from Australia where it's so hot and sunny most of the time it's a shame

  • @ms.meikalewis3298
    @ms.meikalewis3298 8 หลายเดือนก่อน +1

    Please can you tell me where can I get the hat shield they was wearing from?

  • @blacknrd05
    @blacknrd05 ปีที่แล้ว +4

    Fascinating. This condition affects women.

    • @xirisx1988
      @xirisx1988 9 หลายเดือนก่อน

      Boys can have it too.