We are allergic to sunlight - born different
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Date: 2023-09-12
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Comments and reviews: 29
Leigh
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.
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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.
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Lynn
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.
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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.
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karbear26
I don-t have it as bad as these people but I-m very sensitive to the sun. I burn super quick and will get hives from the sun. So I try and stay out of the sun and when I do I put on zinc based sunscreen and wear sun shirts and hats. I can get sun burned in the car.
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I don-t have it as bad as these people but I-m very sensitive to the sun. I burn super quick and will get hives from the sun. So I try and stay out of the sun and when I do I put on zinc based sunscreen and wear sun shirts and hats. I can get sun burned in the car.
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blogs
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.
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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.
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Heather
I cant be in the sun as well but i dont dress like that. Parents put a lot of fear in their kids. Just wait until the kids gets blisters on the burns and when they pop the kids will scream. In the same time ALL kids needs the sun no matter what
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I cant be in the sun as well but i dont dress like that. Parents put a lot of fear in their kids. Just wait until the kids gets blisters on the burns and when they pop the kids will scream. In the same time ALL kids needs the sun no matter what
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Suzy
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!
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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!
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sweet
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
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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
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terriandlola
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
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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
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B.
+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.
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+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.
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Doffy
An yea the sun will effect all Caucasians in someway seeing as they have no melanin to absorb sunlight. You see why a lot can-t handle the sun an some suffer skin cancer
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An yea the sun will effect all Caucasians in someway seeing as they have no melanin to absorb sunlight. You see why a lot can-t handle the sun an some suffer skin cancer
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Dontworryboutit
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
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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
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Rockas360
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.
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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.
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Creativechik
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.
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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.
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Bettina
I think the women from Brazil probably wasn't kept entirely out of the sun like the other girls are. Shows the true damage this disease is capable of.
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I think the women from Brazil probably wasn't kept entirely out of the sun like the other girls are. Shows the true damage this disease is capable of.
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Silver
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.
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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.
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Michael
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
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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
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L. P
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
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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
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islandnightowl
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.
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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.
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Thryss
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
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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
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noname
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.
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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.
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Chaosologist
I've heard of the condition and watched movie where the main character has it as well. It called Midnight Sun
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I've heard of the condition and watched movie where the main character has it as well. It called Midnight Sun
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Olivia
Dermatologist- I-ve seen a lot of people with xp. Narrator- 1 in a million. -300 million Americans so 300 patients?
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Dermatologist- I-ve seen a lot of people with xp. Narrator- 1 in a million. -300 million Americans so 300 patients?
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And
I wish to those people to find a naturopath who might find the root cause of allergy and help! Must be so difficult.
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I wish to those people to find a naturopath who might find the root cause of allergy and help! Must be so difficult.
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Thryss
I'm albino and I think these sweet gals possibly burn worse then me. Never thought I'd see the day. Bless them
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I'm albino and I think these sweet gals possibly burn worse then me. Never thought I'd see the day. Bless them
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truly
They should consider moving to Norway or Sweden. Living in Australia with this skin condition is not smart.
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They should consider moving to Norway or Sweden. Living in Australia with this skin condition is not smart.
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Mandy
Bless them girls. I wish one day there would be science to help them go out into the sun without burning x
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Bless them girls. I wish one day there would be science to help them go out into the sun without burning x
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Patty
the last person seems ill advised to go out for walks in the sun like that. just go for a moonlit walk eh?
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the last person seems ill advised to go out for walks in the sun like that. just go for a moonlit walk eh?
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2prize
I wouldn't be taken them outside at all. These girls will have to work night shift when they are older
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I wouldn't be taken them outside at all. These girls will have to work night shift when they are older
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Andrea
Tbh I am allergic to sunlight as well I just need to wear sunscreens bc it-s my allergy is pretty mild
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Tbh I am allergic to sunlight as well I just need to wear sunscreens bc it-s my allergy is pretty mild
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