tag:blogger.com,1999:blog-1997289535643351212024-03-19T23:52:11.100-07:00Fishy Skin: Living with Ichthyosis Vulgarismadhatterhttp://www.blogger.com/profile/05919690902316120755noreply@blogger.comBlogger23125tag:blogger.com,1999:blog-199728953564335121.post-11271487021594146942017-12-06T20:38:00.000-08:002017-12-06T20:40:00.915-08:00Unpeeling and More Becoming: Life with Ichthyosis VulgarisYou'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.<br />
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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.<br />
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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.<br />
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We carry our own personal hell, magnify it in our heads. Yes, sometimes hiding it is easier. That secret shame of skins.<br />
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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.<br />
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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.<br />
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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.madhatterhttp://www.blogger.com/profile/05919690902316120755noreply@blogger.com0tag:blogger.com,1999:blog-199728953564335121.post-2754914822374860832013-05-10T06:19:00.002-07:002013-05-10T06:19:52.998-07:00Ichthyosis Awareness MonthAccording to <a href="http://lifeasusdotcom.blogspot.com/"><b>http://lifeasusdotcom.blogspot.com</b></a>, 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!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZ1Jd7_9du2HG_xSWE76-Ikrs5sBvCE2-p-LI4wau81wRcRLHim4duVMtQSWc6K2P52AQsgImZwfgiJRvXpvoKM1AbqOS3DDn12PAA7XlGrmZQsTWxZqVeSSPUC_X-pxSiDDBt-8aaQ2Q/s1600/270870_510748522306264_1953367088_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZ1Jd7_9du2HG_xSWE76-Ikrs5sBvCE2-p-LI4wau81wRcRLHim4duVMtQSWc6K2P52AQsgImZwfgiJRvXpvoKM1AbqOS3DDn12PAA7XlGrmZQsTWxZqVeSSPUC_X-pxSiDDBt-8aaQ2Q/s640/270870_510748522306264_1953367088_n.jpg" width="640" /></a></div>
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Or soothe over some strawberry scented Victoria Secret lotion on my skin which really relaxes me :)madhatterhttp://www.blogger.com/profile/05919690902316120755noreply@blogger.com2tag:blogger.com,1999:blog-199728953564335121.post-52011877543833919742012-11-05T10:56:00.000-08:002012-11-05T10:56:00.201-08:00Channel 4 TV Medical Episode Embarrassing Bodies: IchthyosisI found this video from Google. Okay I am definitely not a big fan of the show's title Channel 4's <a href="http://www.channel4embarrassingillnesses.com/video/embarrassing-bodies/consultation-ichthyosis/" target="_blank">Embarrassing Bodies</a>.<br />
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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.<br />
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A note from the show:
<i>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.</i><br />
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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 <i>'Whoa! those are my legs!' </i>They pretty look much like my legs after a bath.
madhatterhttp://www.blogger.com/profile/05919690902316120755noreply@blogger.com6tag:blogger.com,1999:blog-199728953564335121.post-18805240639089783092012-11-03T10:22:00.000-07:002012-11-03T11:10:38.331-07:00Thoughts on Ichthyosis: A Mother WorriesIt 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.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjL_TY3aFlJjxUo2Hoo_8NEtzpWEA3uU61gU5RmU-2q6ETKHNuS14l5LZu5NpMxfTo_6Q2yLVUGz5w3iC2bR6ExjQQDHjPNMYt3uirKEDbimOWfHSTnjuj0sNPo8_zK-i0sKFSgVGyvb5Q/s1600/babychoy.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="476" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjL_TY3aFlJjxUo2Hoo_8NEtzpWEA3uU61gU5RmU-2q6ETKHNuS14l5LZu5NpMxfTo_6Q2yLVUGz5w3iC2bR6ExjQQDHjPNMYt3uirKEDbimOWfHSTnjuj0sNPo8_zK-i0sKFSgVGyvb5Q/s640/babychoy.jpg" width="640" /></a> <br />
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.<br />
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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. <br />
<br />madhatterhttp://www.blogger.com/profile/05919690902316120755noreply@blogger.com5tag:blogger.com,1999:blog-199728953564335121.post-51430726597298655762012-03-02T01:13:00.000-08:002012-03-02T01:13:00.852-08:00Ichthyosis 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.<br /><br /><iframe src="http://www.youtube.com/embed/qBdCqnCEoR4" allowfullscreen="" frameborder="0" height="315" width="560"></iframe><br /><br />A Singaporean teen video blogs about Ichthyosis, looking for possible treatments to ease the condition.madhatterhttp://www.blogger.com/profile/05919690902316120755noreply@blogger.com0tag:blogger.com,1999:blog-199728953564335121.post-30900786933086825632012-02-02T01:12:00.000-08:002012-02-02T07:35:25.372-08:00Ichthyosis Confessions: Embrace Your ImperfectionsChance upon this lovely girl on youtube. She talks about her struggle about Ichthyosis and how her other 7 siblings has it.<br /><br /><iframe width="560" height="315" src="http://www.youtube.com/embed/KYs8a8I2NiQ" frameborder="0" allowfullscreen></iframe><br /><br />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.<br /><br />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?<br /><br /><iframe src="http://www.youtube.com/embed/4Zbz0uF_KqI" allowfullscreen="" frameborder="0" height="315" width="560"></iframe>madhatterhttp://www.blogger.com/profile/05919690902316120755noreply@blogger.com1tag:blogger.com,1999:blog-199728953564335121.post-26056432921712655942012-01-02T01:25:00.000-08:002012-11-06T00:47:08.827-08:00Lamellar Ichthyosis in the Philippines<iframe allowfullscreen="" frameborder="0" height="315" src="http://www.youtube.com/embed/v-n3e0e-rKA" width="420"></iframe><br />
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Filipino Journalist Jessica Soho features two siblings Jessica Canete 11 years-old and Jay-Ar 16 years-old Canete afflicted with <span style="font-weight: bold;">Lamellar Ichthyosis</span>.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIpab0ET_wuaqfD7Jxn4_JWjyTvQMz3l58-sOvehQJJPiE4LYifSjg6KYOE6nlUvA-e683lx8qatCr3Y8OVve4bDF3aI80ltQYUKTs9OoXvLC_K2my9TSyz4o5bj69AYVxJFZI0EKOoTI/s1600/jessica_soho_presents_lamellar-ichthyosis-philippines.jpg"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5688969979979063586" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIpab0ET_wuaqfD7Jxn4_JWjyTvQMz3l58-sOvehQJJPiE4LYifSjg6KYOE6nlUvA-e683lx8qatCr3Y8OVve4bDF3aI80ltQYUKTs9OoXvLC_K2my9TSyz4o5bj69AYVxJFZI0EKOoTI/s400/jessica_soho_presents_lamellar-ichthyosis-philippines.jpg" style="cursor: hand; cursor: pointer; height: 250px; width: 400px;" /></a><br />
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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.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwzKd1rBYDdqSGOanG0eRH5S284Wqte76bhJhJzcbcqDLuVGYSySMRQzaqa4Dv8f-XmQtSUKoFBq-dbW9J31w6I_XtbqS707vKjXkpbEKQhB2qUkK-iQWQ_8dqh51pRd3l26527rjDB1k/s1600/lamellar-ichthyosis-manila-philippines.jpg"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5688969991989549074" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwzKd1rBYDdqSGOanG0eRH5S284Wqte76bhJhJzcbcqDLuVGYSySMRQzaqa4Dv8f-XmQtSUKoFBq-dbW9J31w6I_XtbqS707vKjXkpbEKQhB2qUkK-iQWQ_8dqh51pRd3l26527rjDB1k/s400/lamellar-ichthyosis-manila-philippines.jpg" style="cursor: hand; cursor: pointer; height: 250px; width: 400px;" /></a><br />
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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.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2BkebX35G9E1mzw-49X0FplAnQW1t-PWWwDAVKwwui8bvEprTx6y1PoWxEiC5YjPVuEHCEPSmrhOR9hBRPFYroqaJowzqXlPkv32pEC3cYmYqKPVzTTwE3nq9KPlVk8WSC75GTSi4Z7w/s1600/lamellar-ichthyosis_skin_philippines.jpg"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5688969985287279154" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2BkebX35G9E1mzw-49X0FplAnQW1t-PWWwDAVKwwui8bvEprTx6y1PoWxEiC5YjPVuEHCEPSmrhOR9hBRPFYroqaJowzqXlPkv32pEC3cYmYqKPVzTTwE3nq9KPlVk8WSC75GTSi4Z7w/s400/lamellar-ichthyosis_skin_philippines.jpg" style="cursor: hand; cursor: pointer; height: 250px; width: 400px;" /></a><br />
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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.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjXN5cmhP7WK_0bpdwp19v6SHVXAfG1ud4MFQLg0TXqnMrYKyQUx5-50OGmk-C7PbzznQ3ftdQzhpOF-XT4R17qAhi_qrVpjvPmwThKpW8SnTa7R9nIAm6_myjVkz3baDbOro-yd6GUEM/s1600/lamellar-ichthyosis-philippines.jpg"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5688969995422835762" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjXN5cmhP7WK_0bpdwp19v6SHVXAfG1ud4MFQLg0TXqnMrYKyQUx5-50OGmk-C7PbzznQ3ftdQzhpOF-XT4R17qAhi_qrVpjvPmwThKpW8SnTa7R9nIAm6_myjVkz3baDbOro-yd6GUEM/s400/lamellar-ichthyosis-philippines.jpg" style="cursor: hand; cursor: pointer; height: 250px; width: 400px;" /></a><br />
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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.<br />
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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.<br />
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Jessica interviews the two siblings and notices how shy they are. Tearfully, the Canete siblings have a message for those watching the show, <b>"Please do not be afraid of us."</b><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj32j6dsEzmM2DicM5th09MbM35Xj_zItu-r-prdj1WLp4CwwnhmJMp4Gw448zvwB9Q4vNeZBjnETHm_OgSvcw1Lv3tzbXtsnfVPCNrVoL2Jjf2ALWr0Fr5757ChhHnPfRHqqPfNw3_G7Y/s1600/children-lamellar-ichthyosis-philippines.jpg"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5688970356817720178" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj32j6dsEzmM2DicM5th09MbM35Xj_zItu-r-prdj1WLp4CwwnhmJMp4Gw448zvwB9Q4vNeZBjnETHm_OgSvcw1Lv3tzbXtsnfVPCNrVoL2Jjf2ALWr0Fr5757ChhHnPfRHqqPfNw3_G7Y/s400/children-lamellar-ichthyosis-philippines.jpg" style="cursor: hand; cursor: pointer; height: 239px; width: 400px;" /></a><br />
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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.<br />
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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.<br />
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<i>A personal note to the siblings <b>Jessica and Jay-Ar Canete</b>:</i><br />
<i>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><br />
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<i>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!</i><br />
<br />madhatterhttp://www.blogger.com/profile/05919690902316120755noreply@blogger.com12tag:blogger.com,1999:blog-199728953564335121.post-55311422790719809322011-12-15T07:01:00.000-08:002011-12-15T07:15:07.677-08:00Have 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.<br /><br />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.<br /><br />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.<br /><br />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 :)madhatterhttp://www.blogger.com/profile/05919690902316120755noreply@blogger.com1tag:blogger.com,1999:blog-199728953564335121.post-46968068760484377872011-11-19T08:55:00.000-08:002011-11-19T09:30:13.171-08:00What is Ichthyosis? A Video that Explains it AllI 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.<br /><br />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.<br /><br />If you can't see the video, watch it <a href="http://www.youtube.com/watch?v=SM88sZZz2iY&feature=related"><span style="font-weight: bold;">here</span></a> - <a href="http://www.youtube.com/watch?v=SM88sZZz2iY&feature=related">Foundation for Ichthyosis</a><br /><br /><iframe src="http://www.youtube.com/embed/SM88sZZz2iY?fs=1" allowfullscreen="" width="459" frameborder="0" height="344"></iframe><br /><br /><span style="font-style: italic;">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.</span>madhatterhttp://www.blogger.com/profile/05919690902316120755noreply@blogger.com0tag:blogger.com,1999:blog-199728953564335121.post-28780874062744106922011-10-27T20:14:00.000-07:002011-10-27T20:27:01.867-07:00No Ichthyosis Flakes on my Baby BumpMy 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.<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjToxYyCBW0KKFGFenTlU4nD3Minsovrq3JVK_4F6kejfXTknnS6xGyRS6NdHsZE2dDYi9yVCvOfgx7tK0AZ14C4hHLCQJ_Yu2xIU6C74RDmkaK0ehJUYjHYRkZlCn1AQWMPQszN1EGgT0/s1600/pregnancy+belly+no+cellulite+Ichthyosis.jpg"><img style="cursor: pointer; width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjToxYyCBW0KKFGFenTlU4nD3Minsovrq3JVK_4F6kejfXTknnS6xGyRS6NdHsZE2dDYi9yVCvOfgx7tK0AZ14C4hHLCQJ_Yu2xIU6C74RDmkaK0ehJUYjHYRkZlCn1AQWMPQszN1EGgT0/s400/pregnancy+belly+no+cellulite+Ichthyosis.jpg" alt="" id="BLOGGER_PHOTO_ID_5668378056524534818" border="0" /></a><br /><br />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 :)madhatterhttp://www.blogger.com/profile/05919690902316120755noreply@blogger.com0tag:blogger.com,1999:blog-199728953564335121.post-29286681950710008042011-09-11T06:57:00.000-07:002011-09-11T07:10:46.793-07:00Ichthyosis and PregnancyMy 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. <br /><br />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.<br /><br />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. <br /><br />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.<br /><br />But now I'm just stressing over it and I'm really hoping the genetics lottery would be kind to my baby.madhatterhttp://www.blogger.com/profile/05919690902316120755noreply@blogger.com3tag:blogger.com,1999:blog-199728953564335121.post-61389116167821543562011-09-10T10:14:00.000-07:002011-09-10T10:14:00.161-07:00Airline bans Woman with Psoriasis from Boarding FlightSad, but true. This is the kind of discrimination skin sufferers of genetic conditions such as Psoriasis face.
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<br />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.
<br /><input id="gwProxy" type="hidden"><!--Session data--><input onclick="jsCall();" id="jsProxy" type="hidden"><div id="refHTML"></div>madhatterhttp://www.blogger.com/profile/05919690902316120755noreply@blogger.com0tag:blogger.com,1999:blog-199728953564335121.post-84619569489322366362011-09-01T09:35:00.000-07:002011-09-01T09:35:00.933-07:00If 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!
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<br />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.
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<br /><span style="font-style: italic;">Okay, so honey, that ain't my dandruff on your shirt, but my skin. </span>
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<br />He smiles. <span style="font-style: italic;">So you molt like a snake, so what?</span>
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<br />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.
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<br />Oh yes, love.
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<br />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!
<br /><input id="gwProxy" type="hidden"><!--Session data--><input onclick="jsCall();" id="jsProxy" type="hidden"><div id="refHTML"></div>madhatterhttp://www.blogger.com/profile/05919690902316120755noreply@blogger.com0tag:blogger.com,1999:blog-199728953564335121.post-77433985432291744812011-08-25T01:18:00.000-07:002011-08-27T22:28:25.829-07:00Icthyosis Vulgaris on NipplesI 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.
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<br />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.
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<br /><input id="gwProxy" type="hidden"><!--Session data--><input onclick="jsCall();" id="jsProxy" type="hidden"><div id="refHTML"></div><input id="gwProxy" type="hidden"><!--Session data--><input onclick="jsCall();" id="jsProxy" type="hidden"><div id="refHTML"></div><input id="gwProxy" type="hidden"><!--Session data--><input onclick="jsCall();" id="jsProxy" type="hidden"><div id="refHTML"></div>madhatterhttp://www.blogger.com/profile/05919690902316120755noreply@blogger.com0tag:blogger.com,1999:blog-199728953564335121.post-51421793313520913842011-08-22T10:00:00.000-07:002011-08-22T10:00:00.311-07:00The Psoriasis Hug Me Campaign of 2009Old news, but good news nonetheless! Filipino Celebrity Robin Padilla Supported Psoriasis Philippines during the Hug Me Campaign 2009.
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<br />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.madhatterhttp://www.blogger.com/profile/05919690902316120755noreply@blogger.com0tag:blogger.com,1999:blog-199728953564335121.post-20120635498218904632011-08-16T01:20:00.000-07:002011-08-16T01:20:01.318-07:00The Fuss over Kim Kardashian and PsoriasisWhen 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.
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<br />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.
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<br />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.
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<br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWVZeS81g1CraxWc-oZ8X8DROl9Us517b5tZXxJzg3ooivpb2nN0GiH6pB1NWtyAYAJJ8vMSWTw0PNO5PmC2RSVTX7DUy5lL3FNfjuqggOqnysTv5io2ucK_uAcviPg_r6pZbZG-hCIVU/s1600/kim_kardashian_Psoriasis_heart.jpg"><img style="cursor: pointer; width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWVZeS81g1CraxWc-oZ8X8DROl9Us517b5tZXxJzg3ooivpb2nN0GiH6pB1NWtyAYAJJ8vMSWTw0PNO5PmC2RSVTX7DUy5lL3FNfjuqggOqnysTv5io2ucK_uAcviPg_r6pZbZG-hCIVU/s400/kim_kardashian_Psoriasis_heart.jpg" alt="" id="BLOGGER_PHOTO_ID_5641136821696595234" border="0" /></a>
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<br />On twitter, <a href="http://twitter.com/#%21/KimKardashian">Kim Kardashian</a> 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.
<br /><input id="gwProxy" type="hidden"><!--Session data--><input onclick="jsCall();" id="jsProxy" type="hidden"><div id="refHTML"></div>madhatterhttp://www.blogger.com/profile/05919690902316120755noreply@blogger.com0tag:blogger.com,1999:blog-199728953564335121.post-90009163246375974992011-08-15T09:15:00.000-07:002011-08-15T09:34:54.018-07:00Rock It for Psoriasis: The Psoriasis Philippines Foundation Benefit Concert<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqRZ35gH9EGVXkaT3fqqcRYSyHqkXF4DsaBw2aKXgaVZC9TcGaIDl6kf_L-xcSXGHg2fIYmiwAAwDj0agq88G6LlRDQHaooNY3jbVvz11oKZZT-xTWUyQM0XAuP3zso1_eWoIUVFUkuPQ/s1600/philippine_psoriasis.jpg"><img style="cursor: pointer; width: 400px; height: 184px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqRZ35gH9EGVXkaT3fqqcRYSyHqkXF4DsaBw2aKXgaVZC9TcGaIDl6kf_L-xcSXGHg2fIYmiwAAwDj0agq88G6LlRDQHaooNY3jbVvz11oKZZT-xTWUyQM0XAuP3zso1_eWoIUVFUkuPQ/s400/philippine_psoriasis.jpg" alt="" id="BLOGGER_PHOTO_ID_5641117686971538978" border="0" /></a>
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<br />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.
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<br /><strong>PsorRocks</strong> is a benefit concert organized by PsorPhil (The Psoriasis Philippines Foundation). Their aim is to generate awareness on the Psoriasis skin condition:
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<br />1. Psoriasis is not contagious.
<br />2. The money earned from the concert will go to information-educational campaigns and programs for Filipinos suffering from Psoriasis.
<br />3. PsorPhil links the economically-challenged Psoriasis patients to institutions who can fund their medicines and treatments.
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<br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifiHJaK831Qr87aqdYVoKeXvMDh1sFSQTpXCH05BeBizGfQ22zDLkQs2nimDrIROe6O-HUt9o0VlByxoiw_bKwFkE4CIEshfud6tzjfu0UXKG5FWAfyQvEPdYdE1OzROdtyi_Ghp0n-rk/s1600/psorocks_Psoriasis_philippines.jpg"><img style="cursor: pointer; width: 400px; height: 184px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifiHJaK831Qr87aqdYVoKeXvMDh1sFSQTpXCH05BeBizGfQ22zDLkQs2nimDrIROe6O-HUt9o0VlByxoiw_bKwFkE4CIEshfud6tzjfu0UXKG5FWAfyQvEPdYdE1OzROdtyi_Ghp0n-rk/s400/psorocks_Psoriasis_philippines.jpg" alt="" id="BLOGGER_PHOTO_ID_5641122073403701826" border="0" /></a>
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<br />The <strong>PsorRocks </strong>concert features the following bands: 6 Cyclemind, Grace Note, Calla Lily, Kenyo, Cueshe, Slapshock, Even, Tricia Garcia, General Luna, Up Dharma Down.
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<br />The event will be held on:
<br /><ul class="floating-list"><li><strong>Date:</strong> 20 August 2011</li><li><strong>Time:</strong> 7:00 PM</li><li><strong>Location:</strong> Baypark Area, Service Road of Roxas Boulevard (near Raha Sulayman Plaza)</li><li><strong>Tickets:</strong> GP Php100.00 and VIP Php1,000.00, Available in SM Tickets Branches nationwide.</li></ul>For more details, please call PsorPhil office at<strong> 8893596, 3794290, 09228297767.
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<br /><span style="font-weight: normal;">Visit their website for more info: </span></strong><strong>
<br /><a href="http://psorphil.org/">http://psorphil.org/</a></strong>
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<br /><input id="gwProxy" type="hidden"><!--Session data--><input onclick="jsCall();" id="jsProxy" type="hidden"><div id="refHTML"></div><input id="gwProxy" type="hidden"><!--Session data--><input onclick="jsCall();" id="jsProxy" type="hidden"><div id="refHTML"></div>madhatterhttp://www.blogger.com/profile/05919690902316120755noreply@blogger.com0tag:blogger.com,1999:blog-199728953564335121.post-39849003312955291702011-08-10T03:24:00.000-07:002011-08-10T03:24:02.204-07:00The Butterfly Children of the Philippines: Epidermolysis Bullosa<iframe src="http://www.youtube.com/embed/CaEwliH23ok" allowfullscreen="" frameborder="0" height="349" width="425"></iframe><input id="gwProxy" type="hidden"><!--Session data--><input onclick="jsCall();" id="jsProxy" type="hidden"><div id="refHTML"></div><br />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 <a href="http://www.facebook.com/group.php?gid=379465974466&v=info#%21/group.php?gid=379465974466&v=wall">Philippine Ichthyosis Support Group on Facebook</a>.madhatterhttp://www.blogger.com/profile/05919690902316120755noreply@blogger.com0tag:blogger.com,1999:blog-199728953564335121.post-70408046678250363922011-08-05T01:32:00.000-07:002011-08-08T02:30:39.314-07:00Ichthyosis Support Group in the Philippines<span style="font-size:100%;">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 <a href="http://www.facebook.com/group.php?gid=379465974466&v=info#%21/group.php?gid=379465974466&v=wall">Ichthyosis Support Group in the Philippines</a> on Facebook.
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<br />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.<input id="gwProxy" type="hidden"><!--Session data--><input onclick="jsCall();" id="jsProxy" type="hidden"><div id="refHTML"></div><input id="gwProxy" type="hidden"><!--Session data--><input onclick="jsCall();" id="jsProxy" type="hidden"><div id="refHTML"></div>madhatterhttp://www.blogger.com/profile/05919690902316120755noreply@blogger.com1tag:blogger.com,1999:blog-199728953564335121.post-17646478870482067512011-07-30T01:28:00.000-07:002011-07-30T01:28:00.281-07:00My Ichthy HairI 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.<br /><br />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.<br /><br />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.<br /><input id="gwProxy" type="hidden"><!--Session data--><input onclick="jsCall();" id="jsProxy" type="hidden"><div id="refHTML"></div><input id="gwProxy" type="hidden"><!--Session data--><input onclick="jsCall();" id="jsProxy" type="hidden"><div id="refHTML"></div><input id="gwProxy" type="hidden"><!--Session data--><input onclick="jsCall();" id="jsProxy" type="hidden"><div id="refHTML"></div>madhatterhttp://www.blogger.com/profile/05919690902316120755noreply@blogger.com0tag:blogger.com,1999:blog-199728953564335121.post-19001416665993353892011-07-29T04:00:00.000-07:002012-11-03T09:57:12.817-07:00A Child with Granny Hands: A Case of Hyperlinear PalmsI'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.<br />
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<br />I live in the tropics where certain afflictions particularly of the skin are attributed to some curse or folklore. Great, right?<br />
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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:<br />
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1. I was born with the mark of bad luck. They call it <span style="font-style: italic;">Malas</span>.<br />
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." <span style="font-style: italic;">Okay, I don't think blogging my life away is the adventure I had in mind. Now about those riches? Hmm..</span>.<br />
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 <span style="font-style: italic;">paglilihi</span>, the act of strange food cravings by a pregnant woman that would result in a freaky baby. <span style="font-style: italic;">Hence, moi!</span><br />
4. Your mother bathe you in too much isopropyl alcohol as a child that's why your skin is so dry.<br />
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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 :)<br />
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Kids and teachers would call my hands outright disgusting or really ugly. <span style="font-style: italic;">Or why don't you see a doctor? Why don't you scrub it off? You're Eeew, etc</span>. 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 <i>Our Father</i>. 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.<br />
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madhatterhttp://www.blogger.com/profile/05919690902316120755noreply@blogger.com99tag:blogger.com,1999:blog-199728953564335121.post-82891282455601811922011-07-28T00:24:00.000-07:002011-07-28T03:14:30.913-07:00Some Thoughts on Ichthyosis<span style="color: rgb(102, 51, 102);font-family:georgia;font-size:180%;" >"Wear it like armor and it can never be used to hurt you. ”</span><br /><span style=";font-family:courier new;font-size:85%;" >— Tyrion Lannister to Jon Snow, George R.R. Martin, Game of Thrones</span><br /><br />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.<br /><br />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.<br /><br />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.<br /><input id="gwProxy" type="hidden"><!--Session data--><input onclick="jsCall();" id="jsProxy" type="hidden"><div id="refHTML"></div><input id="gwProxy" type="hidden"><!--Session data--><input onclick="jsCall();" id="jsProxy" type="hidden"><div id="refHTML"></div><input id="gwProxy" type="hidden"><!--Session data--><input onclick="jsCall();" id="jsProxy" type="hidden"><div id="refHTML"></div>madhatterhttp://www.blogger.com/profile/05919690902316120755noreply@blogger.com0tag:blogger.com,1999:blog-199728953564335121.post-64976514051400664092011-07-28T00:08:00.001-07:002011-07-28T01:13:05.267-07:00Welcome to Fishy Skin: Living Life with Ichthyosis VulgarisWelcome to Fishy Skin, a blog about living life with a skin condition called Ichthyosis Vulgaris.<br /><br />What the hell is <span style="font-weight: bold;">Ichthyosis Vulgaris</span>?<br /><br />It's referred to as the <span style="font-weight: bold;">fish scale disease</span> 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.<br /><br />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).<br /><br />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).<br /><br />But for a more precise medical definition, go to this site <a href="http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002422/">PubMed Health</a> or <a href="http://www.mayoclinic.com/health/ichthyosis-vulgaris/DS00734">the Mayo Clinic</a><br /><br />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.<input id="gwProxy" type="hidden"><!--Session data--><input onclick="jsCall();" id="jsProxy" type="hidden"><div id="refHTML"></div><input id="gwProxy" type="hidden"><!--Session data--><input onclick="jsCall();" id="jsProxy" type="hidden"><div id="refHTML"></div><input id="gwProxy" type="hidden"><!--Session data--><input onclick="jsCall();" id="jsProxy" type="hidden"><div id="refHTML"></div><input id="gwProxy" type="hidden"><!--Session data--><input onclick="jsCall();" id="jsProxy" type="hidden"><div id="refHTML"></div><input id="gwProxy" type="hidden"><!--Session data--><input onclick="jsCall();" id="jsProxy" type="hidden"><div id="refHTML"></div><input id="gwProxy" type="hidden"><!--Session data--><input onclick="jsCall();" id="jsProxy" type="hidden"><div id="refHTML"></div>madhatterhttp://www.blogger.com/profile/05919690902316120755noreply@blogger.com2