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 Can someone define me?
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BG Member Posts: 50 |
posted July 19, 2005 08:55 PM
  
I know this gets asked time and time again by everyone but as we are all different i still couldn't work out what Ich i am. Basically my skin looks normal all over except my hands, feet, elbows and knees. My dermo's have only ever said you have Ich but nothing else. In fact my mother never knew til i told her when i was about 18 and went to the dermo myself. They had always just said i had dry skin and eczema to her all those years. I don't know anything about hereditary factors except i have a strong suspicion my dad has the same as me but because he is a man you don't notice so much his hands and all (ie. they are hairy these days!). I don't think he has ever been diagnosed though. i really should talk to him more intently but he has never mentioned it. But his hands and knees etc are very like mine. Thank you so much for any help! IP: Logged |
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immystique Member Posts: 171 |
posted July 19, 2005 09:55 PM
Well, what you have is probably very mild since it's just noticable on your hands, feet, elbows, & knees so you are very lucky! Since that's where your "flare ups" are, what do they look like? Do they look "old" and wrinkly, with little pieces flaking off? Do they look like "alligator skin" with long, rough scales that are stuck on there pretty good? That can help you figure out what type you might have. Keep in mind, it's not a "professional" diagnosis, but it does help! IP: Logged |
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BG Member Posts: 50 |
posted July 19, 2005 10:19 PM
yes i do count myself lucky but as with anything, you always HATE with a vengence what you do have when its not normal looking! Lets see........ Well the scales are quite wrinkly from a distance so people say "why do you have such old wrinkly hands" - bloody hell i hate this one! But Up close they are very much scales but it looks as if that is my skin texture more than that i actually have scales sitting on top of the skin. They are quite ingrained deep scales but quite small not long. I dont get flaky very much at all. Only if i really scratch at it. This make any sense?? Thank you for this. IP: Logged |
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Hearsay Member Posts: 801 |
posted July 20, 2005 10:26 AM
Unfortunately, most dermatologists are either unaware that this condition exists, or are aware of it from medical school 20 years ago but have never actually seen it in person, and often have no idea that there are 30 varieties. The dermatologists you have seen probably fall into the above categories. If you want an actual diagnosis (which will be relevant if you plan to have children), your best bet is to visit a dermatologist in Sydney's children's hospital or to visit one that is a teacher at the nearest medical/research school. As for what you have, it is hard to say from your post. It sounds like you have something similar to what Keith and Evan have, except theirs is everywhere. If you do have the same thing, that would be EHK, which is dominant and matches up with what you said about your dad. If that is true, you have a really mild case. There are other dominant varieties out there, but EHK and IV are the most common. Have you looked at the pictures on the "show and tell" page here? www.scalyskin.org has drawings of what ichthyosis looks like, but not actual people. Another place where you can look is Google. There are lots of clinical pictures on the net, mostly dermatology sites. Many are in different languages, but you can usually read which type if you can't read anything else. This site is in German, but it has really nice pictures. IP: Logged |
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BG Member Posts: 50 |
posted July 20, 2005 07:31 PM
Oh thank you! both those sites were great esp the german one which i changed into english. I most definitely without a doubt have a mild case of IV. It fits with my dry skin, eczema and most importantly my wrinkled palms and soles which seems to be its key feature. Does anyone know if IV can be passed on to my kids? I am assuming as it is called dominant that means yes. Wow! after 28yrs i have self diagnosed(with some help from you guys!)If only dermo's would keep up with their research like i do! IP: Logged |
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Hearsay Member Posts: 801 |
posted July 20, 2005 08:45 PM
Dominant means that you have one affected gene and one normal gene. I know this because your mom is unaffected. Because it only takes 1 gene to make it show up, it is dominant over the normal one. And that means that when you have kids, each one has a 50% chance of getting it...or not. The IV gene is unknown, so there is currently no way to prevent it, and the disease doesn't start to develop in utero until at least 19 weeks gestation or later (unaffected children develop the keratin layer at 24 weeks, so unfortunately, even with a fetal biopsy, it is much too late for an abortion for people inclined to do that. Hopefully the gene will be found in the next few years. I am glad that you came to a conclusion as to what you have. IP: Logged |
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