Wednesday, December 6, 2017

Unpeeling and More Becoming: Life with Ichthyosis Vulgaris

You're here because the lines on your hands have lead your here. You could have spent the time watching Youtube videos, reading an ebook, cooking, shaving, whatever. But here you are, wondering whether what you went through all these years do mean 'something' or you were wondering whether someone else in the world has the same skin or shitty disorder as you do. As it turns out,  you're not alone, though you've long believed this is some orphan disease no one gave a shit about.

Some have survived the taunting, the bullying, the embarrassment, the shame they were made to feel for being born this way. It's not a big deal really, and shouldn't have been a big deal really, compared to other possible genetic problems one might face. Our skin though not normal, our limbs and minds remain functional like everyone else's.

Sure your skin sloughs off, molts, cracks, peels, goes red in places, breaks in patches, lines everywhere. You get a flare up now and then, sometimes painful and unbearable, sometimes not. At least you can breathe, walk-and-talk without assistance, and you have that basic gift of a high-functioning mind (I assume you do because you can read this). Having less of a genetic problem than another person should not make us feel any better. But often we are consoled or empathized this way. I grew up being consoled or empathized this way whenever someone who cared enough found me alone and crying (And it never happened to be my parents- ever!) Caring folks often presented someone else with a much more terrible affliction as a model for 'Your shit could be worse, so suck it up!'. As if, this should instantly lift my spirits and prod me to find some grace in it. I find no comfort or see no silver lining in someone else's suffering.

We carry our own personal hell, magnify it in our heads. Yes, sometimes hiding it is easier. That secret shame of skins.

There were comments and emails from people that this "should not rule our lives".. maybe for a time it did in my life especially when I was younger , as a child, and most specially in my teens. Well, not everyone has that spunky persona with a sharp comeback that can fight off people in a snap. Some of us, the reserved, quiet types are further pushed down to total introversion by said skin disorder. Honestly, my skin stop being an issue once my cracked and lined hands started catching up with my age. I am now known as the adult who possibly worked in the sulfur mines and had to toil by breaking rocks and such with my palms. Only such immense hard labor could have resulted in such worn out hands they say. That or I possibly worked as a laundry woman whose hands are constantly soaked in detergent and industrial bleach. LOL. No, I work a boring deskjob, the hardest thing I have to do with my Icthyosis hands is fix a jammed stapler. I only found grace in this affliction once I gotten this old, when I had my kids.

To the younger ones with Icthy with absolutely no support or love from anyone, time is on your side. You will grow old and grow out of the life you currently have. Time and circumstance will push you forward, you have to brace for it and make good.

Remember, self-love and self-care. No one can do that for you in a way that they really understand you. There is no harm or shame in loving yourself. Self-neglect is the worst thing you can do to yourself. Not just neglect of the body, but of the mind. If you embrace and love yourself more, and not give a shit for once about other toxic people, your life will start to feel a bit better. You will have that clarity to pursue your dreams and find your purpose. How blessed are those with good, loving people around them, treasure them, not everyone has that kind of support in life.

Friday, May 10, 2013

Ichthyosis Awareness Month

According to, its Ichthyosis Awareness Month! Wow I didn't know we had a day to celebrate being in our skins. So well, I'll drink some BEERS to that!

Or soothe over some strawberry scented Victoria Secret lotion on my skin which really relaxes me :)

Monday, November 5, 2012

Channel 4 TV Medical Episode Embarrassing Bodies: Ichthyosis

I found this video from Google. Okay I am definitely not a big fan of the show's title Channel 4's Embarrassing Bodies.

Ichthyosis is hard enough to deal with and sure we feel 'embarrassed' by it. However, the show's title is a shame. Okay after watching the episode, I'm glad it was very straightforward medical show and not a fussy freak-of-the-week thing. I actually like the treatment they presented.

A note from the show: The treatment given to this patient was a combination of Cetraben, Culmurid and Eucerin and then a cling film wrap, but it might not work for everyone so best to go to your GP and get their professional opinion.

Eucerin I've heard before, but not Cetraben. Glad to hear about something new. What amazed me is that the woman's leg had bigger patches of flakes. My flakes are usually 'grouped' smaller. Hers are like countries on a map while mine are like island patches. But surprisingly when she removed the cling film and I saw the pores (the chicken-like pores on her skin) I couldn't help but say 'Whoa! those are my legs!' They pretty look much like my legs after a bath.

Saturday, November 3, 2012

Thoughts on Ichthyosis: A Mother Worries

It has been a year today since I gave birth. I knew the very same day that my newborn had hints of Ichthyosis on his skin. Hubby told me it was too soon to tell. But I knew. When I held my baby he had the softest skin, yet he had too many lines on the soles of his tiny feet and his little fingers had deep lines already.

I wasn't sad, I braced myself for this, but I was worried. I can live with the thought of my son having hyperlinear palms, hyperlinear feet and deep lines on his neck. I am at least hoping he won't have the flaking and the severe shedding that I have. I was hoping that he would take after his father- dark skinned and hairy with no Ichthyosis in sight.

Due to Ichthyosis, I have no hairs on my legs, the hairs are curled up stuck inside the pores which makes my skin look like "prickly chicken skin with dandruff" on most days. I do not wish for my baby, the ridicule I endured because of this skin condition. I do not wish for him, the itchiness, the soreness of the skin on cold months or spending days fully covered, hiding his hands away from the world. I guess any mom with a rare genetic skin condition would wish the best for her child. Well, it has been a year, so far no flakes on my little baby. I hope it stays that way. 

Friday, March 2, 2012

Ichthyosis Confessions: Is It True?

This is part of a series of blog posts I dubbed "Ichthyosis confessions" which features people on youtube talking about their experiences and concerns about Ichthyosis.

A Singaporean teen video blogs about Ichthyosis, looking for possible treatments to ease the condition.

Thursday, February 2, 2012

Ichthyosis Confessions: Embrace Your Imperfections

Chance upon this lovely girl on youtube. She talks about her struggle about Ichthyosis and how her other 7 siblings has it.

Another person to add to my personal heroes. Yes, I agree with her, let's learn to embrace our imperfections. But together, sharing our experiences, we can learn more about how to deal with Ichthyosis.

Out of respect to her privacy, I'll rather not put her name here. You may visit her videos to get to know more about her. Did I mention she has a great singing voice?

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.


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!