Monday, January 2, 2012

Lamellar Ichthyosis in the Philippines



Filipino Journalist Jessica Soho features two siblings Jessica Canete 11 years-old and Jay-Ar 16 years-old Canete afflicted with Lamellar Ichthyosis.



The video on youtube has no english subtitles, so I'll just post the gist of the video segment on Lamellar Ichthyosis here. This video is from the TV program Kapuso Mo Jessica Soho, property of the GMA TV Network Philippines.



Filipinos refer to the scaling as "bitak-bitak" or cracks, but this adjective is often used to describe open craters on dirt roads. The siblings describe the flaking as rough, coarse and itchy. Again with the local superstition, the siblings are believed to have been taken after the skin of crocodiles. The belief has something to do with "lihi", their pregnant mother affected or charmed by the look of a crocodile's skin. Anyways beliefs like these abound the countryside as to explain the unexplainable or bizarre like the effects of Lamellar Ichthyosis.



Jay-Ar has quit school in 2008. He has no peers and feels embarrassed to go to school. He has found himself a new hobby, he plays online computer games at a neighborhood internet shop. Here he says, he can make friends and people don't have to see what he looks like. He has a social media Friendster account, but he feels scared to put up a profile picture.



Jessica describes her ordeal- people call her by many names. They call her 'Galisin' or Dog Mange, Dysebel (a mermaid from local comics), kamandag (a snakeman from a soap opera). But she says besides that they also physically abuse or punch her. But despite all this abuse, Jessica believes its not enough reason to quit school. So she attends school and endures the abuse daily.

Her mother cries and tells her daughter to ignore the stares people give her daughter. Jessica is very smart and active in her class. Unlike her brother, Jessica has friends among her classmates and they stand by her whenever she is bullied.

Jessica interviews the two siblings and notices how shy they are. Tearfully, the Canete siblings have a message for those watching the show, "Please do not be afraid of us."



Dr. Lorna Frez is the consultant dermatologist for the TV program, she says that there are many skin diseases that are not contagious, on the surface they look different. But we shouldn't judge them or ostracize them, you are just adding to their problems.

The end of the segment features an old man with Exfoliative Dermatitis. He has become a recluse and refuses to come out of the house. When he does kids call him a monster. He just ignores them he says children don't know any better. His relatives have abandoned him out of fear of catching his skin condition.

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A personal note to the siblings Jessica and Jay-Ar Canete:
You are two beautiful people who have each other. People may not understand what you look like, but you are not alone. There are other Filipinos like you, there are people out in the world who understand how difficult living with a skin condition such as this can be. 

I am glad that you Jay-Ar have found solace on the web, by having a life on the Internet in chatrooms and online games- you wish to be anonymous and not be judged by how you look, quite understandable. I hope you meet more wonderful people- good friends who will always have your back and accept us with skin problems as we are. You kids have your heart in the right place, stay strong!

6 comments:

  1. Seriously, I had it for three weeks.

    Experimenting myself- I went to Walmart,in Canada (as that's where I live and looked at Vitamin E products
    I bought:

    By Equate- Vitamin E skin oil 30,000 UI
    Dabbed it on with my finger (doesn't work with cotton/ q tips as it's too sticky)
    Every night, put on an old clean t-shirt.
    It was gone within a week.
    I only used a 1/4 of the bottle.
    It has never come back since, and my skin became so soft and have beautiful skin in place.

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  2. Thank you Jason, hope you could give us more info about treatments for Ichthyosis you've tried thanks

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  3. Oh my! It's my first time viewing these videos. I am sure they can get help from using SR lotion available at srlotion.com. It is amazing for the fish-scale skin. I know of somebody who has the same skin condition but milder than what these people are suffering, and SR lotion worked very well for them. I hope they can give it a try. There's no harm in trying anyway.

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  4. How can i purchase sr lotion here in philippines,I don't have any cards like credit cards etc. Im residing in davao city. Pls help

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  5. I wish sr lotion will come here in philippines

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  6. The best way for Treatment of Ichthyosis is to soak the skin in lukewarm water and then slather your still damp skin with a cream moisturizer. You can add epsom salts or add moisturizers like colloidal oatmeal to your bath; salts and moisturizers help your skin absorb the water and lock in the moisture more successfully.

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