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#19926 - 11/30/03 06:07 PM My name is Icthy82, and i have icthyosis...
Icthy82 Offline
Member

Registered: 11/30/03
Posts: 5
yea it sucks, i absolutely hate it, sometimes i think im a freak cuz i cant even take my shirt off without feeling so different. I have it only on my lower back (i cant get rid of it at all), some on my arm, on my thigh and a bit on my buttocks.

Heres the story, when i was young my parents said my skin was absolutely fine (we lived in a tropical area). Around grade 2, when we moved to Toronto, Canada my skin became progressively worse, finally moving to edmonton (dry, cold climate) pushed me to the edge and my skin got worse. My brother on the other hand, has no icthyosis and his skin is soft and perfectly normal.

My icthyosis doesnt hurt, the scales dont go away it looks glued on! I always feel dry. Using lac-hydrin makes my skin feel softer and removes about 20% of the scaling thats about it.

I want to get rid of the scaling, but it seems like its deep into the epithelial layers and there is no flaking really.

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#19927 - 12/02/03 12:57 PM Re: My name is Icthy82, and i have icthyosis...
Promiseland_dup1 Offline
Member

Registered: 02/13/03
Posts: 536
Consider moving back to a tropical climate. If your scales are not bad enough for you to get heat intolerance, you can live anywhere, and would have some cosmetic problems only. But if you have trouble sweating in a cold and dry cliamte, think about moving. It is not easy, but it's an option.
_________________________
Don't ever lose hope when
there is a promised land, and "sweat" dreams

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#19928 - 12/02/03 10:11 PM Re: My name is Icthy82, and i have icthyosis...
Icthy82 Offline
Member

Registered: 11/30/03
Posts: 5
well moving would be an awesome option.... i was thinking of houston or chicago, hopefully thats close enuff in terms of humidity?

in the meantime tho, im more concerned about the cosmetic part of my problem. my skin is dry, but it isnt really all that dry. i cant get rid of the scales! lac hydrin doesnt penetrate into the scales....thats whats killing me, i dont wanna show my gf what it looks like. what can i do while im here?

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#19929 - 12/03/03 12:32 AM Re: My name is Icthy82, and i have icthyosis...
Promiseland_dup1 Offline
Member

Registered: 02/13/03
Posts: 536
I don't think a Chicago winter would be any better than Canada. What would really do the trick, if you have the more prevalent form of Ich, such as Vulgaris (even a severe case) would either be South Florida or Hawaii in the United States.

You may want to try the salt bath that I hear so much positive testimonials about. I hear that it is great for exfoliating the scales. I may be in Hawaii, but I work in air-conditioning, and the scales (severe vulgaris) are present. I should try the salt bath, but I am paranoid about submerging myself in water for an extended period of time. Past experience tells me that it would be drying on the skin. I need to give it a try though.
_________________________
Don't ever lose hope when
there is a promised land, and "sweat" dreams

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#19930 - 12/03/03 02:10 AM Re: My name is Icthy82, and i have icthyosis...
Ep2952 Offline
Member

Registered: 06/16/03
Posts: 60
Loc: CANADA
Hi promiseland and Icthy82- You guys should try the salt baths, they work great.We are having snowy,cold weather here now. Usually, by this time,my skin would be at it's worst.Because of taking regular salt baths,my skin is more in it's summer time condition. I used to use regular table salt and I thought it worked well, but Pauline and some of the others said sea salt was better. I tried the sea salt and they were right- there's a silkiness to the skin that wasn't there with the regular salt. I don't think I'll ever go back to bath oil, because this works better. Promiseland, I don't think that salt baths will dry out your skin.You can actually feel moisture in the water with sea salt in it.

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#19931 - 12/04/03 10:28 AM Re: My name is Icthy82, and i have icthyosis...
Chandra Offline
Member

Registered: 11/20/00
Posts: 707
Loc: Grants Pass, OR
You might want to try at least moving to the coast. Being by the ocean should help a little bit more, even if it's not a tropical type climate. I don't know if the wind would be a problem for you or not though, maybe the others would.
_________________________
I am female, and was born in 1972 with Lamellar Ichthyosis.

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#19932 - 12/04/03 06:56 PM Re: My name is Icthy82, and i have icthyosis...
threerxli Offline
Member

Registered: 01/14/03
Posts: 515
Loc: virginia
We moved from Wisconsin, and stayed in Virginia due to our boys skin. They have x linked. I have to say they were best in North Carolina where the weather stays incredibly humid..we were in Jacksonville for almost four years. Being in Virginia we are ok, except for the dry months. November through about march. This is still a huge improvment from what they would be like if we moved back to Wisconsin. LOL I do not really remember having summer there! (Im Kidding) The fact that you wrote what you did really hit home with me, I always wondered if they would hate me for moving back to where our family is...here they do not have the social trouble they might back there. You have a good point. Thank you

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#19933 - 12/06/03 04:16 PM Re: My name is Icthy82, and i have icthyosis...
Les Avakian Offline


Member

Registered: 08/13/00
Posts: 680
Loc: Fresno, Calif. USA 93705
Hello Ichthy and Everyone
Sorry I havent been responding to your posts. My computer was down for a while and it is not registering the dates of the new posts. As for your problem Ichty, if you have X-LINKED ichthyosis and can afford it, may I suggest you move out to California,Florida, or a milder climate.Many of my X-LINKED friends in the central valley and southern california dont have to experience the harshness of the cold winters of the east coast, midwest, and what you experience in Canada.This morning I watched on TV the snow falling in New York, Boston, and Philadelphia and cannot imagine how bad it would affect my skin.I use lachydrin as you do, and find it works very well.Take care Ichthy.
Sincerely,
Les
_________________________
Les Avakian

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#19934 - 12/07/03 09:39 AM Re: My name is Icthy82, and i have icthyosis...
Anonymous
Unregistered


Hey people,
I have to agree with you on how weather effects us and I have a perfect example. I live in southern california where our temperatures rarely get below 50. Any of you who know me know that I rarely use lotions and creams except on my face and my scales stay pretty much the same year round except for when it gets real hot. Well, over the thanksgiving weekend I went and visited my inlaws in northern part of the state about 400 miles from where I am now. The daytime temps were in the 40's and I felt the effect instantly. Within one day I was so dry I could hardly move and ended up going to the local drug store and getting some eucerin and gooped it on all over which is something I rarely do. It took several days after getting back home before I could stop using the eucerin. Moving to a more hospitable climate definently is better for our skin during the winter months, but is it worth it??? You have to take into consideration the cost of living in these places, the rent and property values here are outrageous and the job market isn't that great. You could spend far more to buy/rent a home here then you would buying gallons of your favorite moisturizer each month. I always here promiseland say "move to hawaii the weather is great for our skin" ( I am in no way putting you down or picking on you promise), currently I have 3 differnt places I could live there on two differnt islands at relatives houses. I would end up in the same boat as so many other people do, can't find a decent job to pay for the extremely high cost of living. Most people I know who live over there have 2 jobs just to get by. To sum it all up, the more favorable climates are great for us but be prepared to pay twice as much for rent or mortgage and make only 10 to 15% more then other areas in wages. The average price for a lot here, a very small lot compared to many places, with what we call a "knockdown" house on it is easily $400,000. It's rediculous. Keep these things in mind when thinking about moving, it's very tough to make it in the more favorable climates because it is a more sought after area.
Keith.

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#19935 - 12/08/03 05:05 PM Re: My name is Icthy82, and i have icthyosis...
Promiseland_dup1 Offline
Member

Registered: 02/13/03
Posts: 536
Hi Keith,

You certainly make a good point about the cost of living. I will reiterate that caveat as well as others I have made as well. Not only is the cost of living higher than average, but there is also the cost of possibly leaving friends and family as well as a familiar cultural surroundings. This applies even more so to Hawaii than to South Florida, let alone the Carribean.

To what extent relocation helps anyone with something other than severe vulgaris I really don't know. That's why I also include that caveat generally.

But I do speak with supreme confidence on the impact of a more hospitable climate on severe vulgaris. And I do harp on this single issue for a number of reasons: (1) I do find the weather to be a prime determinant of the condition of severe vulgaris, but I had to learn this the hard way, through trial and error and not through an advise forum such as this, (2)
I am not speaking theoretically, but drawing on personal experience backed by conventional (but understated) clinical understanding, (3) the paradox of "heat intolerance" can be complicated.

Basically, I am addressing my point to younger people, not those of us have planted roots in a particular community. Younger people need to understand that if their condition is highly susceptiable to the weather, but have a hard time braving snowy winters or dry climates, they have an option to relocate, especially for college.
The earlier the relocation, if that option is chosen, the better. Again, I am speaking from experience. I had ten "lost" years from 18 to 28. I should and could have relocated when I was 18. But I didn't have good foresight and adequate information. And I have had to play catch-up ever since.

I will do all I can to recommend to people to investigate the option of relocation because we don't live in a communist country with an internal passport system. But I will not tell people to "come to Hawaii," as if there is no liability on my part to do so. Even if there is no legal liability for making such a suggestion (or any other suggestion on this board), there is moral liability or guilt feelings. What if someone were to move to Hawaii and something bad happens, like a mugging or something? Besides, I am not in any position to help anybody with time or money.

The only thing I can do is to raise awareness of the option to relocate on this board. People can investigate which place has the best weather for them in the States or world wide and the pros and cons of moving. I would be remiss if I don't speak up as much as I can.

Hope you get a chance to visit Hawaii soon. Take care.
_________________________
Don't ever lose hope when
there is a promised land, and "sweat" dreams

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#19936 - 01/29/04 12:44 AM Re: My name is Icthy82, and i have icthyosis...
Icthy82 Offline
Member

Registered: 11/30/03
Posts: 5
wow thanks for all the help everybody.

It looks like im moving down to Houston for school (will Houston's climate help me?). In the meantime im going to have to live with my condition, and just try using lac-hydrin + sea salt baths.

Recommendations on type of sea salt bath, or the recipe?

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#19937 - 02/05/04 05:36 AM Re: My name is Icthy82, and i have icthyosis...
Funky McDumpster Offline
Member

Registered: 02/05/04
Posts: 10
Loc: Bay area, CA, USA
Find a chick who's into reptiles, they dig it. Seriously, Women never had a problem with my skin, or at least they were too polite to say anything. Don't worry about it, there are plenty of other problems to deal with in relationships, skin is # 4027

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#19938 - 12/23/04 02:17 AM Re: My name is Icthy82, and i have icthyosis...
mansueslupus Offline
Junior Member

Registered: 12/23/04
Posts: 4
Loc: Atlanta, GA, USA
Yeah it does suck and I've certainly felt like a freak many times but hey, what's normal anyway? I've got the x-man version of ich, but I understand the symptoms to be pretty similar to vulgaris. My work has bounced me all around the country over the years. The only time in my life I was virtually free of symtoms was when I lived in S. Florida. I am happy to say I am heading back to Fl soon and will only leave again if I find out how to make a living in the Caribbean. Obviously I support the warm climate theory. I think the salt baths are a good idea though becuase the real benefit I have received in the past was soaking in the ocean and then soaking up rays on the beach. It seemed to be the combination of sun and salt water. Otherwise it's bottle after bottle of lac-hydrin, plus special shampoos and a scalp brush, oil laden soaps, moisterizers, cortizone drops for my ears and tear drops for my eyes. Oh, and one more approach. You were saying how the scales still didn't come off? Me neither, except that a few hours after I do the lactic acid bit, I use my fingernails and just rip the damn things off. This regimen (when I have the discipline to do the whole thing) makes me feel ok about my skin with women but it can get interesting when they first realize my bathroom holds more of this kind of stuff than their's does. :-) I always claim that at least I give a good massage because my plams are so soft from applying all the lotions to myself. :-)

------------------
Ray
_________________________
Ray

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#19939 - 12/23/04 06:14 AM Re: My name is Icthy82, and i have icthyosis...
R Offline
Member

Registered: 02/20/03
Posts: 226
Ichy82 I understand exactly where you're coming from. I used to use Lac-Hydrin 12% and really it made the condition worse to me because it caused excess scaling all the time and would leave me feeling almost too moisturized, for example, when I applied it in the winter my skin would feel like I was fresh out of the shower the whole day and freezing my *** off or in the summer it would make me feel way too hot. Right now I'm using Eurcerin with urea. Lac-Hydrin doesn't have any urea in it and urea in combination with a smaller amount of lactic acid seems to help me more than just a large amount of lactic acid does. One thing about lactic acid is that it can build up in the muscle tissue and can cause the muscles to cease. A few times when using Lac-Hydrin in excess (I've used massive amounts to try and help before) I've had severe muscle weakness and at a few times have felt as though my whole body was made of strings. I know it sounds crazy but it has happened to me and I believe it's caused by excess lactic acid build up from the Lac Hydrin. Anyways enough ranting. Right now I'm taking omega 3 flax oil and drinking 2 liters of water a day and my skin is the best it's ever been in my life. I have absolutely no scaling on my upper torso or arms anymore and in other places it's very minimal except on my feet and ankles. Usually around this time of year I don't wan't to go out in public because of severe flaking all over my face and scalp and discoloration and flaking on my neck and just the overall discomfort of having a large amount of scales clinging to my body. You should give Omega 3 oil a shot and invest in a nice brita water filter and start drinking water all the time and see if it helps. I know it has helped a few other people with Ich V besides myself.

Best regards

[This message has been edited by R (edited December 23, 2004).]

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#19940 - 01/07/05 04:04 PM Re: My name is Icthy82, and i have icthyosis...
charmed7 Offline
Member

Registered: 03/07/04
Posts: 165
Loc: Hartford, CT
I wanted to make a small comment, though many of this hits home when it comes to raising my 6 year old that has x-link. But hopefully I am raising him to be proud and to take the obsticals life has given him and face them head on. But every now and then I get him giggling because I tell him he's just like Wolverine since he heals so darn fast. I tell him I wish I could get over a cut, or sun burn as fast as he could. He wakes up and it's gone.

Good luck and enjoy all your adventures.
_________________________
I have a gifted 14 year old boy with X-Link Ichthyosis, Type I Diabetes and Bipolor Disorder.
I have a 7 year old girl who is uncanningly healthy
I have a spunky 1 year old who doesn't quite understand the word "No" yet.

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#19941 - 04/19/05 04:26 PM Re: My name is Icthy82, and i have icthyosis...
Connor Offline
Member

Registered: 07/25/01
Posts: 24
Loc: Kansas City KS
Hi everyone,
I cant believe all the comments made on this topic. Sometimes I read questions on the board that seem to offer no real information at all. But everyones input on this is great even though the topic has fluctuated slightlty. I also cant believe the number of ppl with x-link, i was thinkin it was just me and les. Firstly, in response to charmed, I too have noticed my fast healing rate, everyone comments on it, and i too felt like wolverine after watching x-men. I just thought it was me but could be something to do with x-linked, would be strange to know why though. I think its great that i heal so quick, i often joke at my dad and mates when they take so long to heal, I work security on the evenings at a night club and when fights break out im usually back 2days later completely normal. Secondly i would like to add a few points about the creams and lotions ppl use. I have noticed that it is important to use certain creams on different severities of your skin scaliness/dryness. For example, Am-lactin works great on my forearms and legs where scaling occurs, however, my stomach has always been smooth and clear with normal moisturisers. When i used amlactin on it though it started to get dry. So it seems important to give the certain areas of your body what it needs. Scaled areas need urea or lactic acid, but "normal" skin which may just get dry only need moisturisers such as vaseline intensive care, E45 etc. I have also started using the glycerin/water lotion on my body after a bath and i felt like how i do in summer when i sweat all the time. I felt warm and 'closed in' and was so comfortable I went straight to sleep. Dont use it abundantly on your face though as that felt greasy and was too hot. Thirdly, I would like to ask some ppls input on the comment made about the use of lactic acid affecting the muscles. I've been an avid body builder for 5 yrs now, dont do steroids e.t.c as i just want a strong, good natural physique, but i have noticed over the last year that my muscle size has decreased and i have been gettin shaky. I have also found it harder to lift the same weights in a way ive never felt b4. Anyway i'll end this here as anyone with small attention span will be gettin bored now. Great posts by the way everyone.

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