Thursday, December 15, 2011

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 :)

Saturday, November 19, 2011

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.

Thursday, October 27, 2011

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 :)

Sunday, September 11, 2011

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.

Saturday, September 10, 2011

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.

Thursday, September 1, 2011

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!

Thursday, August 25, 2011

Icthyosis Vulgaris on Nipples

I underwent biopsy surgery for a bump on my left breast once. The doctor-interns/residents were arguing that I might have something more because my nipples and areola were flaking and had a thick crust of skin on it that would molt and fall off. It seemed very unusual for a teenager to have back then and was thought to be a troubling sign for other breast conditions. The surgeon told them to shut up, he told them I had Icthyosis Vulgaris. They asked, how did he know? Surgeon says the patient told me so. And he went back to doing the biopsy.

Okay, so I guess its really important to note your medical history whenever you are in treatment for something. Young doctors can't help nitpicking everything they notice on your body.

Monday, August 22, 2011

The Psoriasis Hug Me Campaign of 2009

Old news, but good news nonetheless! Filipino Celebrity Robin Padilla Supported Psoriasis Philippines during the Hug Me Campaign 2009.

This was an event and an active campaign by PsorPhil to raise awarenessin the Philippines that Psoriasis is not a contagious disease. Other celebs giving out hugs include Robi Domingo, Jake Cuenca, and Nancy Castiglione.

Tuesday, August 16, 2011

The Fuss over Kim Kardashian and Psoriasis

When a celeb gives a face to an affliction, this can be a boon or bane, but just the same it tells us that such genetic disorders don't spare anyone celebs included.

So the big celebrity news that has households swinging the term Psoriasis around is surprisingly attributed to Kim Kardashian. Her legs are now hounded by the paparrazi when news of her Psoriasis flare-ups reach the tabloids.

So in a span of a week, there has been so much coverage on Kim Kardashian having Psoriasis. What a way to debut such news, quite timely since August 2011 is National Psoriasis Awareness Month. I guess the whole world is now pretty much informed and googling about what Psoriasis is and what it possibly looks like on a lovely Kim Kardashian.

On twitter, Kim Kardashian shows the world a cute little heart shape spot of Psoriasis. Just what the world should know about that Psoriasis sufferers need understanding, not discrimination. Like everyone else, Psoriasis and Ichthyosis sufferers have a lot of love to give.

Monday, August 15, 2011

Rock It for Psoriasis: The Psoriasis Philippines Foundation Benefit Concert

It is estimated that 1.9 million Filipinos are believed to be suffering from the genetic condition of Psoriasis. Some choose to hide their skin affliction by all means possible and by all means, that is close to living in seclusion, hiding from the rest of the world. Psoriasis sufferers much like Ichthyosis sufferers try to put up a brave front to fend off the stigma that goes with such skin conditions.

PsorRocks is a benefit concert organized by PsorPhil (The Psoriasis Philippines Foundation). Their aim is to generate awareness on the Psoriasis skin condition:

1. Psoriasis is not contagious.
2. The money earned from the concert will go to information-educational campaigns and programs for Filipinos suffering from Psoriasis.
3. PsorPhil links the economically-challenged Psoriasis patients to institutions who can fund their medicines and treatments.

The PsorRocks concert features the following bands: 6 Cyclemind, Grace Note, Calla Lily, Kenyo, Cueshe, Slapshock, Even, Tricia Garcia, General Luna, Up Dharma Down.

The event will be held on:
  • Date: 20 August 2011
  • Time: 7:00 PM
  • Location: Baypark Area, Service Road of Roxas Boulevard (near Raha Sulayman Plaza)
  • Tickets: GP Php100.00 and VIP Php1,000.00, Available in SM Tickets Branches nationwide.
For more details, please call PsorPhil office at 8893596, 3794290, 09228297767.

Visit their website for more info:

Wednesday, August 10, 2011

The Butterfly Children of the Philippines: Epidermolysis Bullosa

The blisters these Filipino children have to live with are scathing and painful. Every once in a while local TV stations would feature people suffering from skin conditions like Epidermolysis Bullosa. Wish Ko Lang (My Wish) is a charity TV show that aims to grant wishes of those suffering with afflictions or in dire poverty. I found the link at the Philippine Ichthyosis Support Group on Facebook.

Friday, August 5, 2011

Ichthyosis Support Group in the Philippines

If you are suffering from skin conditions similar to Epidermolysis Bullosa, Ichthyosis vulgaris, Lamellar Ichthyosis or an inherited skin condition that shows extreme scaling and blistering, there is a Ichthyosis Support Group in the Philippines on Facebook.

We all know by now that there is no cure because the condition is genetic. But there are treatments and ways we can help each other deal with the condition through support and sharing of information. Those afflicted can share their stories, tips, medication info, treatments pursued, doctors and specialists they've consulted. So please like or add the group in your facebook page or inform someone you know who has this condition that such a support group exists.

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.