Friday, May 10, 2013

Ichthyosis Awareness Month

According to http://lifeasusdotcom.blogspot.com, 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!

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 :)