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Living with a rare skin disorder | The Skin We Wear | Full Episode



#cna insider #skin disease #skin disorder #cna #News & Politics
**This documentary contains images that may be disturbing to some viewers. Viewer discretion is advised.**
Harlequin Ichthyosis is a rare genetic disorder that causes thick and scaly skin that is prone to cracking and constant infections. In the past, babies born with this condition rarely live beyond the first few days. Today, sufferers are able to lead normal and productive lives - but not without obstacles..
From 2-hour long oil baths and constant moisturising, to stares and judgement from strangers, their struggles are physical, social and emotional..
Enter the lives of four individuals coping with Harlequin Ichthyosis in Singapore, Hong Kong and Vietnam. Three-year-old Zoe may have lost all her hands due to the condition, but she's not lost her joy for life. Despite being visibly different, 13-year-old Aliya navigates the teenage years with grace. Two-year-old Ngoc Bich is an orphan in Vietnam, waiting for a family to adopt her. And 26-year-old Mui Thomas' achievements are proof that a fulfilling life is possible even with a lifelong condition..
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CNA Insider photo 1 Living with a rare skin... CNA Insider photo 2 Living with a rare skin... CNA Insider photo 3 Living with a rare skin... CNA Insider photo 4 Living with a rare skin...

Find yourself a man like him , even tho his daughter is like this , he didn't abandon her and loved her the same

by Yee Xuan 2 months ago

im literally 40 seconds in and so stunned by her confidence already, literally playing with her sister saying "where are my fingers!" and giggling about it
despite her illness she's such a happy child and her father clearly loves her so much

she is a precious little angel oh my god...
edit: i love how supportive her siblings are, what a wonderful family - he has done an amazing job as a father

by Algrenion 2 months ago

I'm Mui, I appear from . I'm really glad that this documentary was made. Hopefully we can use this to raise awareness of Ichthyosis and related skin disorders.

Love from Hong Kong

by Mui Thomas 2 months ago

Zoe be speaking full sentences when I can't even spell triangle when I was three

by Faith Shi Hui 2 months ago

Zoe is so beautiful and an intelligent child she made me cry so much I wish God's healing upon her

by Sajida Latiff 2 months ago

I was born with eczema, always thought it was terrible and how my life was miserable. But after knowing that this kind of skin condition exists, it made me really sad, she's so confident and happy. I can relate alot to the fact that showering and bathing hurts. God bless this little girl.

by Y o o n g i 2 months ago

Zoe's father deserves an award for the deep love and understanding he shows towards her and she's lucky to have a supportive family even though the mother is nowhere around.
Mui's also turned out to be a confident young woman, kudos to the couple who adopted her, hers is the worst type of itchyosis but she's strong and confident and wish her all the best.
The poor child from Vietnam, I hope and pray she gets adopted into a wonderful and loving family and she grows up to be a confident person.
I really relate to all this, especially what zoe's father said because I have a child with lamellar ichthyosis. After a long and difficult situation when she was a child and we knew very little about this type of skin condition, I am glad to say that today she is a beautiful, confident young lady and is currently enjoying her life in university and I pray that she graduates with a degree and goes forth into this world to claim her spot in the sun. For more information and tips, stories of similar children and families going through similar situations , please look up FIRST, Foundation for Ichthyosis and Related Skin types, based in the USA. Also please don't use soap as it dries out the skin, use a mild soap or put oats in the water to soften the skin.

by TheInaa9 4 weeks ago

i just realized that zoe's name in chinese is happiness/"joy" when her grandmother is calling her in chinese. she was wonderfully named, right to her personality!!

by july j 2 months ago

I have a niece that has this but she has all her limbs. Heโ€™s absolutely beautiful and extremely lucky to have an amazing family that loves him as he is.

by lili0829 2 months ago

I salute him... That girl is so lucky to have a father like him..

by DD 2 months ago

zoe's dad is the true singaporean of the year. i hope that in the future, any endeavours on his or zoe's part will be met with support and that there will be more awareness of conditions like this in singapore and the region. godspeed to the families in this documentary and i hope the kids grow up to be strong, intelligent young people. i can see it in them.

by the price of salt 2 months ago

GOD give me a husband like that loving, patience,hardworking and understanding Ameen.

by Yeeesss Jimiin 2 months ago

The fatherly love is amazing, God bless this family and zoe....

by Ding Ding 2 months ago

Hi, I'm Lupe and I have Lamellar Ichthyosis. I am 22 years old. I hope this documentary raises awareness for Ichthyosis and other skin related disorders โ™ฅ I love to make youtube videos and try to live life. I hope you guys can learn more about this disorder and try to raise awareness!.

by LupitaGee21 2 months ago

Zoe dad, u r the only singaporean guy i seen so brave. I really respect u. In future if u need any help can PM me. N will send u my contact number. Ur three kids all look pretty n handsome in all our heart. They will grow up healthy n clever. Ok bro take care neer any help pls PM me.

by Titus See 2 months ago

Charis and Benjamin seem so mature and caring towards Zoe.

by name surname 2 months ago

her father is a blessing

by chaeify 2 months ago

Zoe is incredible but I am more amazed by her father. His Christ like approach to the situation is an inspiration for us all.

May Lord Jesus continue to bless your family. Amen.

by Jasmine J 2 months ago

Mp3 Download

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