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They should do a special day at Disney/amusement parks where it’s open at night for people with this condition

@CatLife230

Жыл бұрын

They should

@demongirl8338

Жыл бұрын

They should yes

@spulwasser

Жыл бұрын

​@@thenightking7167 🥶

@thenightking7167

Жыл бұрын

@@spulwasser, is that emoji in my honor?

@spulwasser

Жыл бұрын

@@thenightking7167 in acquiescent fear, my king🫣

What a wonderful young woman, blessed with a loving supportive family. What we take for granted ... she will excel in life

@altijd_vuurwerk3735

Жыл бұрын

Microsoft Excel

my great grandma had a sunlight sensitivity as well. her car had specially tinted windows, she'd do most of her shopping around sunset and would still go out with her sunhat, sunglasses, and gloves. that is, when she wasn't able to have a child or grandchild run errands for her. i always remember her revving up her lawnmower at 7 or 8pm to go take care of her yard. for a woman 'not allowed' in the sun, she had one of the most beautiful yards i had ever seen. beautiful flowering bushes all over and willow trees by her creek. she'd sit out during sunrise all dressed up for the sun and wave at the trains as they passed by, and they would always blow their horn and wave to her as well.

@Splat654

Жыл бұрын

What a beautiful story! Your gran sounds like a lovely person.

@blueaqua9300

Жыл бұрын

does she look much younger than her age bc all of that sun protection ?

The courage and the willingness to fight and fight to survive in such a young person is so hard to watch - yet you soon realize this is what a true hero looks like.

Beautiful young woman. I pray she thrives in spite of this. I remember being her age and how much it meant to fit in with the other girls. Hopefully they are nice to her. Girls can be cruel at that age.

What an Incredibly Beautiful Young Girl!! Her Family & Dr's Love, Support and Dedication are what will get Her through this Life!!

Remarkable young lady! And her family is so supportive! My thoughts and prayers go out to the family for strength for the long haul! Dr. Emma, you are great too! Blessings and Peace ❤️✝️

Dr Emma is amazing ❤️ wish more Derms were like her so through & understanding.

She’s a beautiful girl! She had a bright future ahead with a wonderful family.

I read about a girl who was so allergic to UV light that her school replaced its lighting system. She also did not expose any of her skin to sunlight. I hope that Olivia is able to manage her condition and have some semblance of a normal life.

What a beautiful young lady! Stay strong Olivia! You are smashing this. Big hugs twinkle ❤️

I wish safety and a happy life for this strong girl

😞 shes a sweetheart. Doesn’t deserve this!!!

She is so beautiful God bless her recovery

This is bravest little girl in the world! 15 surgeries already! God bless her and her family and friends.hugs from Winchester. X

Poor baby, much strength❤

What a wonderful wee girl. Beautiful family and doctor. Makes all the difference. Good luck wee woman ❤❤❤

This poor girl!!!!

Such a brave young woman!! We have skin cancers in our family but only with getting older. God bless Olivia and her family!

Olivia looks so much older then 11 and so glad she is asking question to learn for herself.

Poor little darling. I will pray for you sweetheart. Keep doing what you’re doing and I hope they come up with something that can help you better.🥰🥰🥰🥰🥰🥰🥰🥰🥰🥰take care love from Australia

You are such a brave and lovely young lady. Prayers for you.♥️🙏♥️

She’s beautiful God bless her and her family

Poor baby. She is such a pretty girl.

I've had 5 skin cancer surgeries and it's emotionally draining, this young woman is very very strong. I wonder if photodynamic therapy would be any help to her.

She’s so beautiful and so brave. And definitely stylish!! Can’t deny that! ♥️

what a sweet young lady!

If my kids started to freckle that badly I'd have dunked them in zinc and ran to the doctor. Poor kid. That must be awful for the family too.

@donnamccartney8470

Жыл бұрын

God Love her. Jesus I pray you heal this prescious baby girl. And also for her Family, they have all been thru so much, grand them all peace dear father. I ask in Jesus Prescious Name.

@fmcm7715

Жыл бұрын

@@donnamccartney8470 sadly there is no cure for this skin condition. God isn’t going to help it.

@donnamccartney8470

Жыл бұрын

@@fmcm7715 I hear you

@donnamccartney8470

Жыл бұрын

I don't know what you meant by that comment about a skin condition. Can you explain?

@fmcm7715

Жыл бұрын

@@donnamccartney8470 this poor girl has Xeroderma pigmentosum which is an inherited skin condition which has no cure.

She’s so beautiful and smart ❤

God bless your family, she is a strong mature young girl and I pray your future is fulfilling 💜🤲

I’m praying for Gods helping hands and continued endurance When kids like to go out and play like they should - it would be rather concerting with a condition as this ♥️🇨🇦

I wish you all The best Olivia

Poor girl

Such a nice family and a sweet brave young lady. Much love and best wishes 🥰🇺🇲👍

She's so beautiful!

Bless her

She's amazing

What a brave and beautiful young girl. When I was little we called these beauty spots, but it sucks what you have to do, but you are learning new ways to enjoy life. I wish you happiness, love and lots of laughter. You are very lucky you have Dr. Emma, one day this will just be a story you share, I hope you get rid of all these spots and your beautiful face shines out.

She is a brave girl and she's also have right to live like all of us, please don't worry, be passion, everything will be fine, even if we are far from you but all our prayers good wishes are with you, you have wonderful family, the result will positive soon, kindly courage to the girl, thank you.🤗🙏💙

I love Dr. Emma. What a sweet doctor.

She’s beautiful! 🎉

She is a moon child ♥️♥️

At least she’s British so she doesn’t get as much sun and heat as other places

Amazing young women

While I don't have her condition, I do have borderline severe eczema. Its a nuisance every day. Then I get break outs and flare ups. In my own way, I understand the frustration of skin. Sometimes it does get so bad that wearing clothes is painful, showering is painful and i cannot sleep. Problem with sun is when it gets too hot, sweat is bad and too dry is bad. I have no happy medium. Thankfully I only get sunburns but to get cancer as a result. What a trial. I dont know any different for my skin and neither would she. I think people underestimate how your skin can really cause problems and its the largest organ in the body.

What a darling. She has gone through so much. Being allergic to UV is like being allergic to water or air you can't avoid it. I wish her the best for her future. ❤

Beautiful girl❤

Wow, what a wonderful family. Thank goodness Olivia doesn’t live where I am…in very sunny high UV Queensland Australia.

Godspeed💜💯

She’s beautiful and I hope she lives a long healthy life and as medicine progresses they find a cure for her and I hope life gets easy for her and she lives the best life ever. ♥️

@aussiefurbymogwaifan6621

4 ай бұрын

I don't think there is a cure, the best solution is accommodations and adaptions

I am 41 years old and I can't even pronounce it for an elven-year-old to be pronouncing it mad props

She has a very cute face and personality. As stressful as it is for her parents, she seems to have a great attitude and personality that makes it worth all the extra effort.

Skin check I've got so many moles that it would take more than a day to check lol I'm covered in them

@snappiepappie9899

Жыл бұрын

samee

Damn she's beautiful

I have a similar condition but not as bad as her's.

Are there any adults who have this condition??

is there any treatment that can do something about existing sun damage, such as co2? would that do anything for her? what about dna repairing creams?

where did all her freckles go? Did they go away because she can't go in the sun anymore?

@lettus143

Жыл бұрын

i think it's how many areas she's had to have biopsied and worked on. you'll notice they're all missing in large circular patches.

🙏

How wasn’t this diagnosed before ? So many of her problems could have been avoided. Half of her cancers will be from previous damage now I bet

😢

Was it said somewhere why she needed general anesthetic instead of local?

🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻

Bro said my b day

Love heal her in the name of Jesus Get well soon sweetie

@xirisx1988

Жыл бұрын

Jesus won't heal her and doesn't get wel soon. It's a genetic disorder that she will have for the rest of her life.

These are the tell tell signs of porphyria. All the symptoms are here burning skin, sensitive to light, blistering, and if she did a urine test or a smear it would turn pink. Only thing that can be done is do not expose to light, wear sunscreen with an SPF rating on 10 or above, and if it comes to it she will need her blood filtered because one of the symptoms of porphyria is urine or smear test turning the color of your sex pink for females and blue for males and in extreme cases purple. People have died from this they call it the Royal Disease, The Madnesses of King George, Vlad's Blight, and Vampire Disease became Vlad the Impaler had it and which is where the vampire myths come from. Porphyria is fatal but treatable as long as you don't exposure who has it to light.

@donnamccartney8470

Жыл бұрын

You couldn't just pray for the prescious baby, you had to give the parents one more thing to worry about. Where is your heart?

@adrianpaul817

Жыл бұрын

@@donnamccartney8470what are you on about 💀 they’re just saying another thing it could be which could help treatment?

@renyputman7118

Жыл бұрын

That disease doesn’t seem likely at all. The Wikipedia says that it usually comes in “attacks” and this disease doesn’t just affect the skin. From the Wikipedia on porphyria, “Symptoms of an attack include abdominal pain, chest pain, vomiting, confusion, constipation, fever, high blood pressure, and high heart rate.” None one these symptoms were even hinted at, let alone discussed, in the video. I’m not claiming to be a medical professional but not meeting most of the criteria, probably means you don’t have that disease.

@BunnyJedi

Жыл бұрын

They specifically say that she has XP - xeroderma pigmentosa. A different diagnosis.

@corinnelehr

Жыл бұрын

She has a definite diagnosis of xeroderma pigmentosum. This is confirmed by blood test. It would be extremely unlikely to have both porphyria and xeroderma. The color of urine in acute porphyria is pretty noticeable and does not depend on whether the patient is male or female. Dr. Google/Wikipedia strikes again.

That is horrible girl so young so cute children

she's like a real vampire

I wish GPs (at least in the US) were actually good at being a doctor and providing actual help and results rather than being a referral factory to a specialist. They seem to just be a "middle man" anymore. 🤦🏼‍♀️

You should get her tested for the m.t.h.f.r vitamin deficiency. Most doctors don't test for this and it will show if she is deficient in b vitami s and folate too. I was after COVID and it's very important to get proper methylation. You can KZread it. It will help her heal faster!

Oh poor sweet thing. Bless her little pea-picking heart. I had DNA tests done recently. It turned out I was 89% British/Wales. Scandinavian Sweden German. Now you would think I was white as Wonder Bread. I am not I have brown tone to my skin. And if I am in the sun for 19 minutes I darken and any longer I turn very brown. The only think I can attest it to be is being2 %Native American and 2% African.

Where did the cure to cancer go? $ is made on mans suffering when it’s not necessary

She can't go touch grass

@blueaqua9300

Жыл бұрын

she can at night under artificial lights

Manche hören sich gerne reden.

You must stop eating sugar

@user-ll5id2kw8g

Жыл бұрын

It’s sun - uv… hello idiot

@ZiggyonMars

Жыл бұрын

Did you watch the video???

@pourquoipas971

Жыл бұрын

Stupidity is speading here.. you think it is funny ?

@Hollyferris

Жыл бұрын

🤦🏼‍♀️

@xirisx1988

Жыл бұрын

Do you really think that would work 🤣😂🤣😂🤣.