Saturday, July 30, 2011

My Ichthy Hair

I am not sure if this is common to Icthyosis Vulgaris sufferers, but the condition of my hair has always been odd and baffles all the hairstylists I've been to. My scalp is rather oily, but my hair is very dry. If I don't comb it throughout the ends, it will tangle and turn into matted hair clumps.

My sister though she doesn't have Icthyosis Vulgaris, she has gorgeous skin. However, we share the same hair type. Our hair is oily at the scalp, but very dry in general. Dry to almost brittle which depends on the weather. Our hair color is dark brown. Honestly, the matting is annoying. I don't know what causes it. Maybe its the Ichthy, maybe its not.

The hair in my ichthyosis pores however are black and coarse and curled up. It amazes me when I pull them out of the pores, some are rather long. I guess if I had normal pores, I would be this girl with hairy legs.

Friday, July 29, 2011

A Child with Granny Hands: A Case of Hyperlinear Palms

I've been called many things and many names growing up. People would discuss my fishy skin right in front me as if I wasn't there. They would prod and stare at it and theorize how this came about. But thinking about all that name calling, amuses me now. It seemed to mystify people that someone like me can actually live with something like this.

I live in the tropics where certain afflictions particularly of the skin are attributed to some curse or folklore. Great, right?

Imagine me, being seven arguing I have Ichthyosis Vulgaris, a tongue-twister of a skin condition. But people can just simplify things and tell me stuff like I'm cursed. My hands are cursed. Well, I really have hyperlinear palms, imagine the sight of "granny-like" hands on a seven year-old. The adults can't get over it, they have crazy theories like:

1. I was born with the mark of bad luck. They call it Malas.
2. A palm reader once told me at the shocking sight of my hyperlinear palms, "You will live a complicated life filled with adventure, heartache and riches." Okay, I don't think blogging my life away is the adventure I had in mind. Now about those riches? Hmm...
3. Its your mother's fault, she craved nothing but fish throughout her pregnancy and my skin is the result of it. Locals refer to it as paglilihi, the act of strange food cravings by a pregnant woman that would result in a freaky baby. Hence, moi!
4. Your mother bathe you in too much isopropyl alcohol as a child that's why your skin is so dry.

Personally, my mom blamed herself a lot on the Ichthyosis Vulgaris, she thought it was these medications she took while she was pregnant with me that caused it. Or that she didn't take enough vitamins for me in the womb. I think the concept of genetics and how Icthyosis conditions are hereditary doesn't seem like the plain and simple truth to her. I wish she didn't have to blame herself so much, but my mom is on a different planet on her own anyway. We're not very close you see. And I really felt distant from her growing up. But, still I love you Mommy :)

Kids and teachers would call my hands outright disgusting or really ugly. Or why don't you see a doctor? Why don't you scrub it off? You're Eeew, etc. They would even call others in like their co-teachers and other kids just to see how ugly the lines on my hands were. As a result, my classmates wouldn't play with me. No one would touch my hands during school activities that required holding hands such as dancing or praying the Our Father. One kid cried so hard when the teacher forced him to hold my hand, he felt he would get the disease, so I did him a favor and told him we could just pretend to be holding hands or he could hold to my finger so the teacher won't scold him. So that was grade school for me in the Philippines, having Ichthyosis in this small part of the world is no piece of flake.

Thursday, July 28, 2011

Some Thoughts on Ichthyosis

"Wear it like armor and it can never be used to hurt you. ”
— Tyrion Lannister to Jon Snow, George R.R. Martin, Game of Thrones

I honestly wouldn't mind living with this skin condition if the kids and adults around me growing up weren't so cruel. It's a skin condition that's not disabling or painful (unlike other skin conditions that are very severe) Ichthyosis Vulgaris (the one I have) is pretty mild and tolerable, but just the same psychologically upsetting. I don't know if it varies in degree of severity per person. But I'm sure the severity of the psychological scars varies on people struggling with this condition.

I've met some people as life went on who had that flaking and molting going on their skins, but alas not entirely in the sisterhood of Ichthyosis Vulgaris, but more on psoriasis, eczema, some form of seasonal molting due to atopic dermatitis, etc. So I was pretty much alone.

Things only get better as you get older because by then you get to understand the Whys and the What-Nows. Eventually you learn how to deal with it, emotionally you get to develop a thicker hide just to fend off the teasing and cruelty directed at you.

Welcome to Fishy Skin: Living Life with Ichthyosis Vulgaris

Welcome to Fishy Skin, a blog about living life with a skin condition called Ichthyosis Vulgaris.

What the hell is Ichthyosis Vulgaris?

It's referred to as the fish scale disease because that's how it looks, you got flaking all over like dandruff except its on your arms and legs. To some extent on other parts of the body.

You got the lines, baby. The palm of your hands are heavily-lined, you have these criss-crossing lines (thin ones over thick ones intersecting like some traffic accident).

You got these blackheads that if you uproot them you'll find a coil of hair, curled up miserably in the pores. The result is you have red or black bumps on your arms and legs (almost like chicken skin when the feathers are plucked away). The only good side I see is that you end up not so hairy after all or you have no need to shave throughout your life).

But for a more precise medical definition, go to this site PubMed Health or the Mayo Clinic

Come to think of it, perhaps I was mermaid in a past life and all those fishy scales had to carry over into the next life... this one. Growing up I thought it was some cosmic cruel joke, but you eventually learn to deal with the facts that its all tough luck based on genetics.