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#4480 - 02/13/08 04:23 PM Call out to Promiseland...
Sarah Helen Offline
Member

Registered: 05/31/03
Posts: 383
Loc: Twin Cities, Probably North of...
Hello,
this message is for Promiseland. I would have done a private message but your profile is not too full of information. [img]http://www.ichthyosis.com/ubb/smile.gif[/img]

My interest has been peaked by some of your questions and statements on the BB lately. I have a suspicion that you have had success in a relocation of some sort and would be interested in hearing more.
I've also noticed that you have an interest in the geographical dispersement and origins of the different types of ich. I am also interested in such things and would love to chat with you about it.

Please, if you would like, feel free to contact me publicly or privately as I am interested in what you have to say.

Cheers!


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Sarah
35 with EHK
_________________________
Sarah & Son
EHK & ARCI
"Today is the Tomorrow that you worried about Yesterday, and all is well"

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#4481 - 02/13/08 10:18 PM Re: Call out to Promiseland...
Promiseland_dup1 Offline
Member

Registered: 02/13/03
Posts: 536
Love to talk, but let me gather my thoughts.
_________________________
Don't ever lose hope when
there is a promised land, and "sweat" dreams

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#4482 - 02/14/08 12:55 AM Re: Call out to Promiseland...
Promiseland_dup1 Offline
Member

Registered: 02/13/03
Posts: 536
Yes, I have had success with relocation as a form of "treatment" in dealing with Vulgaris of the most severe form. In my case, it happens to be very severe Vulgaris. But I would forget what type you may or may not have. You would get stuck unnecessarily. Relocation to a hot and humid climate should work for anyone with severe ich who could sweat, sometimes quite profusely. Because we can sweat a lot under the right conditions, the sweating clears the skin of scales, which in turn allows for more sweating in a virtuous cycle. In the absence of sweating (either due to living in cold weather, working in air conditioning or dehydration due to over consumption of alcohol) for people with ich who could sweat, scales would build up and a really nasty "prickly itch" would result. This has been my mantra on the board since I found the website.

Why do I harp on this?

(1) There is no better alternative than living in a hot and humid climate in keeping the symptoms of ich at bay for those of us with severe ich but who could sweat. No topical lotion or systemic drug can even come close. Why? Because weather is a deterministic variable. A major function of the skin is cooling, i.e., sweating. Ich impairs this function. The weather that facilitates sweating has a “double whammy” effect. Sweating clears the scales allowing for more and easier sweating the next time. On the flip side, the weather that hinders sweating also has a “double whammy” effect in a negative way. In the absence of sweating, scales would build up. Then, the cold weather that inhibits sweating would in turn contribute to this build up. The weather is not neutral; it is a double whammy for good and for bad.

(2) I also harp on this because it is not obvious and transparently true. It is counter-intuitive. Intuition says if heat causes prickly itch, then you avoid the heat. I was under this false assumption for some time in my teenage years. If I who was afflicted was under this false assumption, imagine how easy it would be for a parent to believe this. You have to learn, either through the hard way of trial and error or through advice and education, that the heat is your friend if you have severe ich but can sweat.

(3) I also harp on this because F.I.R.S.T and this board are naturally designed to serve the rarer but more severe cases of ich, primarily CIE and Lamellar. Those afflicted cannot sweat and we hear a lot of discussion, among afflicted and parents, about cooling vests and heat stroke heat intolerance, etc. Mildly cool climates are optimal for these conditions. My mantra about hot and humid climate is intended to educate people, especially parents, that mildly cool climate and air conditioning is not right for every type of ich.

(4) Lastly, I also harp on this because I do not want others to “reinvent the wheel.” I am extrapolating from my own experience in which I did not have complete and correct information as a youngster and made wrong decisions and choices in my education, professional and social life in my late teens and 20s. By the time I realized the option and need to relocate, I did it about ten years later than I should have. By then, mistakes could not be undone and patterns of behavior, like drinking beer, had been ingrained. Since relocation, I have had to play catch-up. And I was just venting on the board yesterday about having to deal with the anathema that is air conditioning, and being at the mercy of it working in any office. This is the outcome when I had to learn the hard way by myself. Had I known the options and their ramifications earlier, I would have done either of the following after relocating much sooner: (a) Learned a trade, such as construction, where I would be working outdoors most of the time or (b) Be my own boss (sooner than now or by now) in a professional service office situation where I can dictate the exposure or lack of exposure to the drying effect of air conditioning.

Basically, when I was young and living in a colder climate, I did not have the hope and optimism that the prospect of relocation would have provided. And in their absence I did not have the discipline and foresight to properly plan my relocation and my career to enjoy the highest quality of life I otherwise could have. Since then everything has been playing “catch-up.” IF BY POSTING ON THE BOARD I GIVE SOME PEOPLE INFORMATION ABOUT THE PARAMOUNT IMPORTANCE OF CLIMATE AND THEY, ESPECIALLY IF THEY ARE YOUNG, CAN BENEFIT BY PROPER PLANNING OF THEIR EDUCATION AND CAREERS, THEN I KNOW I HAVE DONE MY DUTY.
_________________________
Don't ever lose hope when
there is a promised land, and "sweat" dreams

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#4483 - 02/14/08 02:12 AM Re: Call out to Promiseland...
Promiseland_dup1 Offline
Member

Registered: 02/13/03
Posts: 536
If I speak confidently about the benefits of hot weather for some types of ich, I am on much less sure grounds for population distribution of different types of ich. I have nothing but personal observation and hypothesis.

Personal observation: some types of ich are very prevalent in some populations versus others. Vulgaris of various severity is very prevalent among Chinese from southern provinces of China and their descendents living outside of Asia. On the other hand, I have never seen or met or heard of a person from Japan or of Japanese ancestry who has ich, Japan being a colder climate than southern China. Logical extrapolation: the types of ich where people can still sweat are much more prevalent in the warmer regions of the world where the symptoms are minimized and those afflicted can more readily marry and pass on the genes to future generations. In the colder regions of the world, people with more severe ich symptoms may have had a tougher time living past infancy when childhood mortality rates were very high even for more healthy children. I am just thinking about severe Vulgaris and X-linked in this case.

As far as the rarer cases, such as Lamellar or CIE or EHK or the other types, where one in how many hundreds of thousands are born with the condition, I really do not have any speculation. If life is tough now imagine how much worse it would be for them anywhere in the world in days gone by. I have no informed opinion about origins or distribution for the rarer types.
_________________________
Don't ever lose hope when
there is a promised land, and "sweat" dreams

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#4484 - 03/16/08 12:01 AM Re: Call out to Promiseland...
dslacker Offline
Member

Registered: 08/26/00
Posts: 61
Loc: Copenhagen - Denmark - Europe
Personally I think it is safe to say that at least the rarer types that is NOT caused by family inheritance is caused by spontaneous mutation. It is my personal (totally scientifically unfounded :-) ) belief that these mutations are caused by one or the other parents exposure to certain chemicals AND bad luck.

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The Danish Slacker
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dslacker@trustme.dk
"Have you got the will to be weird"
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_________________________
The Danish Slacker
-------------------------
dslacker@trustme.dk
"Have you got the will to be weird"
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#4485 - 03/17/08 05:30 PM Re: Call out to Promiseland...
immystique Offline
Member

Registered: 03/09/05
Posts: 271
Loc: Grand Junction, CO, USA
dslacker, I'm pretty sure (and scientifically founded & everything) that those of us with the more rare types ARE caused by family inheritance--sometimes you need to go waaaayyy back to find someone with the condition, or who was at least a carrier.

Or for those of us with a mutation, I doubt environmental factors and parental exposure to "something" was/is a cause. It's just another "myth" perpetuated by uninformed individuals who swear that those of us with ich are "drug babies" or worse.
_________________________
If the grass looks greener on the other side, maybe it's time to start watering your lawn!

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#4486 - 03/17/08 05:35 PM Re: Call out to Promiseland...
immystique Offline
Member

Registered: 03/09/05
Posts: 271
Loc: Grand Junction, CO, USA
Quote:
Originally posted by Promiseland:
If life is tough now imagine how much worse it would be for them anywhere in the world in days gone by.


I've often thought the same thing! I grew up in the midwest (South Dakota). Sometime in jr high, we were studying the exploration/settlement of the plains, and how families settled and lived. We talked about them living in sod houses, carrying water, dust storms, prarie fires, only making trips into town once a month, etc.

Everyone started asking questions about entertainment, how did young people date, how did they have so many kids without doctors to help them, etc.

And the first thing that came to my mind? How did those with ichthyosis take care of themselves if there was no Aquaphor or Vaseline? LOL
_________________________
If the grass looks greener on the other side, maybe it's time to start watering your lawn!

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#4487 - 03/18/08 02:36 AM Re: Call out to Promiseland...
Chandra Offline
Member

Registered: 11/20/00
Posts: 707
Loc: Grants Pass, OR
I have to put in my 2 cents on Promiseland's soapbox, so move over a little bit!

I live in Oregon which is considered a "mild" climate. I'm miserable every summer and winter but have always been told (and still am) that this is the best climate because it's relatively wet.

When I was in Atlanta, GA for five days in 2006 for the ichthy conference, my skin felt better than it had ever felt in all of my then 34 years. So much so that I came home and told my husband that once he is done with school and looking for a teaching job, we need to consider moving to the South. The South may not always be wet as in raining, but it is HUMID and *that* is what helps me the most in terms of climate.

I also have to agree that air conditioners and heaters are such a catch-22. If it's not hot and humid enough to cause you to sweat (if you are even able) then you want to turn on the AC and keep cool so you don't get heatstroke; the problem with that is that it dries you out even more. AC and heaters dry out everybody, no matter what condition their skin is in and we're such lucky ducks that most anything that's bad for anyone's skin is much worse for ours.

Personally, I think anybody that has the ability should try spending at minimum a week in each different type of climate they'd like to live in. A week's vacation that involves traveling can be very expensive and so can relocating, but, if that's an option for an affected person and their immediate family, it's worth considering.

I'm lucky enough to have traveled a wee bit through the United States and the only place I have yet to visit is the northeast. I've been on the west coast, both northern and southern, to the midwest, and as mentioned, the south. Should it be "South" or "south" since I'm referring to a region? Anyway... that's probably more than 2 cents worth.
_________________________
I am female, and was born in 1972 with Lamellar Ichthyosis.

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