Piccoli Fiori JMJ Posted January 20, 2005 Share Posted January 20, 2005 [quote name='http://www.ichthyosis.com/showntell.htm#What%20is%20Ichthyosis']The Ichthyoses are a family of skin diseases; the characteristic that they each share is that they cause the skin to build up and scale (some medical journals and dictionaries still refer to ichthyosis as "fish skin disease’). The degree of scaling can vary; some people who have ichthyosis just have dry skin. They can pretty easily care for their skin with drugstore lotions, and unless they told you they had trouble with dry skin, you probably would never know that had it. As you might guess, this type of ichthyosis is fairly common. However, most forms of ichthyosis are much more severe (also very rare). The scaling can be very heavy—you definitely notice right away, just passing someone on the street, that something is wrong with their skin. However, it’s much more than a cosmetic problem for the person who has ichthyosis—the scaling can be very painful, as it can restrict the body’s range of movement, pull so tightly around the face that the eyelids turn outward, cause deep cracks or fissures at the joints, adversely affect hearing, and more. People who have ichthyosis will probably try their best to hide these problems from you. They don’t want you to pity them, and they don’t want their ichthyosis to stop them from doing everything in life that everyone else can do. However, living with ichthyosis can be very tough. Dermatologists have recognized more than 25 types of ichthyosis, however, there are just a handful of main types: Lamellar Ichthyosis, Congenital Ichthyosiform Erythroderma (CIE), Epidermolytic Hyperkeratosis (EH or EHK), X-linked Ichthyosis and Ichthyosis Vulgaris. With the exception of Ichthyosis Vulgaris, Ichthyosis is a very rare disease.[/quote] I have Ichthyosis... Not sure what type of Ichthyosis though... [quote name='How It Happens']Your skin is alive; it is your body’s largest organ! With "normal" skin, the skin is constantly renewing itself, dying, and shedding (the average skin cell has a lifespan of 14 days). Most of the time you probably don’t even notice that this is going on. When your skin sheds, it’s practically invisible (unless you’re looking at it under a microscope!) because it’s shedding in pieces that are so small. With ichthyosis, the skin doesn’t follow the life cycle that it’s supposed to, and builds up. In CIE and EH, the cells reproduce too fast, faster than they can shed, and build up. In Lamellar Ichthyosis, X-linked Ichthyosis and Ichthyosis Vulgaris, the skin cells reproduce at a normal rate, but they don’t shed as quickly as they should, and again produce a build-up.[/quote] A bit of how it happens up there... [quote name='What it is Like to Have Ichthyosis']One of the things your skin normally does for you is regulate your internal temperature. People with ichthyosis are often more sensitive to temperature changes, both hot and cold. However, overheating poses the biggest problem. Hot weather, vigorous physical exercise, anything that would normally cause you to sweat and be hot, poses an issue for people with ichthyosis (many of whom can't perspire, or only sweat a small bit in certain places...not enough to naturally cool themselves down). So people with ichthyosis go to great lengths to stay active and avoid heat exhaustion (or worse!). There currently is no cure for ichthyosis; only treatments. Caring for ichthyosis is very labor-intensive. It means spending lots of hours every week bathing, scrubbing the skin in an effort to shed some of the scales, putting on creams to help moisturize and exfoliate....it's a never-ending battle, where you can never quite seem to get the upper hand. Caring for ichthyosis is as much about looking good as feeling good. For people with severe forms of ichthyosis, the goal (which is tough to achieve), is two-fold: make the skin look "normal" enough that people on the street don't stare, call you names, or always ask you what's wrong with you, and secondly to make the skin feel good, so that your skin doesn't make it painful to move, impair your hearing or effect your eyesight.[/quote] Now, in my case, all of this isn't true... I am lucky and I have a very mild case... I've seen pictures of how bad it can get, so I'm rather lucky... This is what my hand looks like: [img]http://img.photobucket.com/albums/v359/LausTibiChriste/HAND.jpg[/img] I'm 18... looks like the hand of maybe a 70 year old... I dunno... I just felt likt I should make the pham aware... For those who complain about dry skin... be lucky you don't have this... Link to comment Share on other sites More sharing options...
Cathurian Posted January 20, 2005 Share Posted January 20, 2005 I'm so sorry. Praying for you. Link to comment Share on other sites More sharing options...
Piccoli Fiori JMJ Posted January 20, 2005 Author Share Posted January 20, 2005 [quote name='Cathurian' date='Jan 20 2005, 09:19 AM'] I'm so sorry. Praying for you. [/quote] It's okay... it's really nothing to be sorry about... It's just my genetic make-up... I mean, my life if different in a few simple ways compared to a person with normal skin, but, really, it is okay! Prayers are always wonderful though, thank you for your concern. Link to comment Share on other sites More sharing options...
Piccoli Fiori JMJ Posted January 20, 2005 Author Share Posted January 20, 2005 [img]http://img.photobucket.com/albums/v359/LausTibiChriste/HAND2.jpg[/img] It could be worse... [img]http://www.dermatologylectures.com/dermnet/dermnetpictures/Eczema/pictures/03ichthyosis040127.jpg[/img] [img]http://www.nlm.nih.gov/medlineplus/ency/images/ency/fullsize/1914.jpg[/img] [i]MUCH[/i] worse... [img]http://www.healthcentral.com/mhc/fullsize/1915.jpg[/img] Link to comment Share on other sites More sharing options...
Sojourner Posted January 20, 2005 Share Posted January 20, 2005 My grandma has that. I have it to a lesser extent ... for me, it's just really bad dry skin. It's exacerbated by cold weather. Link to comment Share on other sites More sharing options...
Noel's angel Posted January 20, 2005 Share Posted January 20, 2005 ouch Link to comment Share on other sites More sharing options...
Piccoli Fiori JMJ Posted January 20, 2005 Author Share Posted January 20, 2005 [quote name='Sojourner' date='Jan 20 2005, 01:21 PM'] My grandma has that. I have it to a lesser extent ... for me, it's just really bad dry skin. It's exacerbated by cold weather. [/quote] Really? I think I've only known one other person in my entire life that had Ichthyosis... Link to comment Share on other sites More sharing options...
Sojourner Posted January 20, 2005 Share Posted January 20, 2005 [quote name='FutureNunJMJ' date='Jan 20 2005, 01:24 PM'] Really? I think I've only known one other person in my entire life that had Ichthyosis... [/quote] Yep. My grandma has the official diagnosis. She never wears skirts because of it, actually. If I wear skirts, they're always long, because I've got scars from the really dry spots back before I got good at keeping up with lotion. Link to comment Share on other sites More sharing options...
Piccoli Fiori JMJ Posted January 20, 2005 Author Share Posted January 20, 2005 wow... I know, lotion is a big thing... I know I have a mild case and I am lucky... but still, the lotion can be a bummer... When I go on retreats and stuff, people always complain about how long I take in the bathroom, when most of the time is putting creme on.... Link to comment Share on other sites More sharing options...
Sojourner Posted January 20, 2005 Share Posted January 20, 2005 Yeah, I mainly have problems with legs and feet, although my hands can get bad if I'm not careful. Pretty much I douse myself with lotion after getting out of the shower. Link to comment Share on other sites More sharing options...
Piccoli Fiori JMJ Posted January 20, 2005 Author Share Posted January 20, 2005 Yeah, best time to do that Do you use a prescription creme or no? Link to comment Share on other sites More sharing options...
Thy Geekdom Come Posted January 20, 2005 Share Posted January 20, 2005 I don't have that, but have you ever seen the hands of an obsessive compulsive handwasher? I'm one of them...they're much better in recent years, but they get to the point where they sting constantly and start bleeding for no apparent reason. Link to comment Share on other sites More sharing options...
Sojourner Posted January 20, 2005 Share Posted January 20, 2005 That's no fun, Raph. but glad to hear you're better. Link to comment Share on other sites More sharing options...
Piccoli Fiori JMJ Posted January 20, 2005 Author Share Posted January 20, 2005 [quote name='Raphael' date='Jan 20 2005, 01:48 PM'] I don't have that, but have you ever seen the hands of an obsessive compulsive handwasher? I'm one of them...they're much better in recent years, but they get to the point where they sting constantly and start bleeding for no apparent reason. [/quote] ouchies... I know if you don't put lotion on ichthyosis, I know it gets red and cracks and sometimes bleeds... This isn't much fun, but what we have to live with Link to comment Share on other sites More sharing options...
Thy Geekdom Come Posted January 20, 2005 Share Posted January 20, 2005 Yes, it's a cross. I don't mind bearing it when I'm alone, but when I'm at Steubie, I'll have reason to have smooth hands...I need to work hard to keep them that way. They're actually fine right now, save being a little red. Link to comment Share on other sites More sharing options...
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