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#19906 - 02/14/03 02:57 AM
Re: Someone help us! (icthyosis Vularis)
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Member
Registered: 02/13/03
Posts: 536
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Hi,
I just joined ichthyosis.com as a new member, and saw your post on the bulletin board. I want to offer you some insight based on my experience. If your boyfriend actually has vulgaris, I can speak to that because I have it too.
Vulgaris means “common” and a lot of people have it. But the severity of it ranges from very mild to very severe. Aside from the cosmetic and aesthetic problems you described, severe cases suffer what’s called “heat intolerance.” This occurs when the flakiness of the condition gets so bad that the pores are blocked and you cannot perspire when you need to perspire. You did not mention heat intolerance in your posting, but I suspect your boyfriend may suffer this, especially in the colder months.
If vulgaris is his problem, I suggest that he should consider relocating to a milder climate than the Northeast. The warmer and more humid year round the climate, the better the aesthetics and less risk of heat intolerance. If your boyfriend actually has vulgaris, you should see a change in his condition based on the changes in the seasons. If his condition is better in the summer, because the heat and humidity clear the flakiness from his skin, imagine how much better he would be living in South Florida or any tropical climate. If your boyfriend had vulgaris, he should have an inkling of this already. So don’t give up hope.
_________________________
Don't ever lose hope when there is a promised land, and "sweat" dreams
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#19907 - 04/13/03 06:27 PM
Re: Someone help us! (icthyosis Vularis)
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Junior Member
Registered: 04/13/03
Posts: 3
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brennyangel- I was touched by your concern for your boyfriend and hope that I can offer a little help in what I've learned dealing with icthyosis. I have experienced many of the same physical and social discomforts you described, and though I don't have any hard answers for you, I do know a few things that have made my life more bearable.
I also live in upstate NY (in Ithaca) and understand the trouble in finding knowledgable doctors. There is a good dermatologist in Ithaca, named I.A. Tangoren, who has been helpful in treating me. He is very kind and knowledgable and would ceratinly help you (though it is probably a couple hour drive for you).
Th best advice I can give, however, is also the hardest to use, and that is your boyfriend needs to learn how to love his skin. I know this sounds insane, because if he is like me there isn't a minute that goes by that he doesn't curse his skin, feel freakish socially, or even blame himself for the suffering he has had to endure for 21 years. But what he should try to recognize, and what I am sure you have already recognized in him, is that dealing with this has probably made him a much better person. I have found that 22 years of icthyosis (I also have sever eczema, which makes things a little more complicated)have made me very compassionate towards anyone else whose body is a source of suffering, anyone who is embarassed by the way they look, and even the general insecurities that everyone has. What I am really trying to get at, is that approaching this dilemma with an attitude of total love and acceptance is the only way to really deal with it. Icthyosis by nature (along with many other skin conditions) is relentless and grueling. If he has a mindset that is negative, then that negativity will only manifest itself in his skin. You can really help him here (my ex-girlfriend prevented me from killing myself by loving me unconditionally and showing me that life didn't ahve to be dominated by pain). Love him completely for who he is and what he has endured, but also be careful to offer him an alternative-don't dwell on his problems, just accept that they are there, deal with them the best you can, and really focus on the rest of life.
I also want to mention that I have had some considerable success with alternative treatments-in fact, far more so than with anything a dermatologist has told me. I think the fact that many doctors don't know what to tell you is very telling in that medical science simply does not know how deal with this completely, and thus it might serve you well to consider other treatments. I have had the most success with acupuncture, and I get the impression others have too. Also, I think diet plays an extremely important role. I try to eat very clean foods (by that I mean basic natural foods-free of added sugar, refined flours, excess fat or oil, MSG, etc) especially large amounts of oily fish like salmon. I also have completely cut dairy products out of my diet and discovered that I have a mild dairy allergy, which manifested itself by causing itching. In addition to those two things, I have experiement with hypnotherapy, homeopathy, and biofeedback. All of these have been helpful, but you will probably need to look around a while before you find good practitioners. There are some in Ithaca, but again I don't know how much time you want to spend driving.
I hope this all helps you in some way-writing it was actually very helpful for me. If you or your boyfriend wants to talk more to me about this (especially since I am his age) feel free to email me at etj6@cornell.edu.
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