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!

Have a Snowflakey Christmas!

I love Christmas for the food and the festive holiday spirit, not to mention the gifts and visits by friends and family.

The holidays however do bring about something very constant about the season- the cold air. As much as the weather here is humid and regularly hot. Come Christmas the winds turn cold making it a lot difficult for me to deal with the Ichthyosis flaking.

The worst Christmas flaking I had was when I was 9 years-old, I remember my heels cracking open. The hyperlinear lines on my soles usually just open up, revealing the fleshy part beneath it :( Yup, its bad enough to dampen my holiday spirit. Imagine, not being able to walk around for Christmas shopping due to achy heels.

Fashion today offers a bit of comfort for me, I'm glad knee-high boots are so in this year. Will definitely cover up my flaking legs this Christmas. As for my soles, they don't open up as much anymore, I don't know why really. But I'm not so upset anymore, I've learned to deal with the Ichthy surprises :)

What is Ichthyosis? A Video that Explains it All

I think of all the Ichthyosis skin conditions, I am afflicted with the mildest form, I consider myself still fortunate despite how aggravating the "mildest" form is. I cannot begin to fathom the severity and difficulty of living with Ichthyosis of the extreme or rare kind.

There seems to be an Ichthyosis family of genetic skin conditions as discussed in the video below. I'm glad I found this video which got me really aware about the other Ichthyosis types.

If you can't see the video, watch it here - Foundation for Ichthyosis



A video introduction to the Foundation for Ichthyosis and Related Skin Types, Inc. an organization dedicated to educate, inspire, and connect those touched by Ichthyosis and related disorders. Filmed at FIRSTs 2008 National Family Conference in Chicago, Illinois.

No Ichthyosis Flakes on my Baby Bump

My baby is due any day now and my Ichthyosis has been acting up with a vengeance on my thighs and legs. I feel a great tightness around the skin on my legs, I feel like my legs are like sausages about to burst from their casings.



It has spared my preggy belly though, it must be the cocoa butter that's working on overdrive. I've been rubbing supple amounts on my belly and even on the 9th month, I'm not overly plagued by dark stretchmarks or even flaking unlike my first pregnancy. Its a great relief if you ask me :)

Ichthyosis and Pregnancy

My bump is growing bigger and bigger by the day. Unlike my first pregnancy which I looked hideously large, this time I look like a normal-size mom (almost that I don't look preggy at all except for the large belly). I don't have any flaking either. In fact, I have great skin throughout this pregnancy, must be the hormones. My linea negra didn't appear on my belly, my hair is fab, not dry and I have no stretch marks this time.

Unlike before the stretch marks and the flaking would go hand in hand. It looked awful. In between the cellulite, the cracks would appear and the really dry areas would crack open forming little cuts. Similar to diabetic patients when they have cuts on their garter-belt areas near the belly. The pain is tolerable, but just makes the whole pregnancy a bundle of discomfort.

The Ichthyosis Vulgaris during pregnancy is quite bothersome near the legs if you have edema or swelling, the skin stretches and you feel everything so tight around that skin area of the legs (like a sausage stuffed in a tight casing). You see more of your veins underneath and the flakes are drawn out flat because its fully stretched out.

I just hope my second baby, won't have Ichthyosis. A very mild form of it would be a blessing, the way my youngest sister is (just hyperlinear palms and no flaking). My eldest son is also the same no flakes just hyperlinear palms and feet.

But now I'm just stressing over it and I'm really hoping the genetics lottery would be kind to my baby.

Airline bans Woman with Psoriasis from Boarding Flight

Sad, but true. This is the kind of discrimination skin sufferers of genetic conditions such as Psoriasis face.



On March 11, 2010, A professor named Magnolia Mendoza was on her way to Manila but was blocked from boarding the plane by Cebu Pacific because of her Psoriasis. I guess they thought she was contagious.

If I Molt, would you Bolt?

Dating and Ichthyosis was never an issue for me as long as I kept one away from the other. Ha!

Well, if you date a guy long enough, every thing will go beyond skin deep. Eventually you realize some human beings will see you as a real human being and not a walking contagion. I guess I got lucky in that department, the guy didn't bolt when I molted. I think I held the fort long enough to cover my Ichthy past the third date, so I got around to it and told him so.

Okay, so honey, that ain't my dandruff on your shirt, but my skin.

He smiles. So you molt like a snake, so what?

I guess one can never fully realize the sense of relief that comes after. Now when you're beyond the Ichthyosis and whatever other issues. Its time to really focus on the relationship and the more serious and sometimes mind-numbing issues between two human beings like love.

Oh yes, love.

There is enough love in the world for people with Ichthyosis, you just need to get out of your flaky shell and find it :) Goodluck!