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#19902 - 02/05/03 04:03 PM Someone help us! (icthyosis Vularis)
brennyangel Offline
Junior Member

Registered: 02/05/03
Posts: 4
Loc: Clinton Ny USA
My boyfriend has been diagnosised with Ichthyosis Vulgaris since he was born... He is now 21 yrs old.. We live in Upstate Ny and there really isnt that good of doctors around here... When he was younger they use to do all sorts of treatments on him for example they use ti give him shots in his head of a steriod thinking it would help it but it only made him bald... He recently has been going to a new doctor around here but he really doesnt know anything... He has tried many creams and many shampoos but nothing is working... His scalp is also getting infected all the time... The doctor gave him a cream which when he was under a black light at bowling he glowed in the dark... Having this has always been very embarrassing for him and it just made it ever worse... In school he was always picked on about it and after a yr of dating he is finally comfortable with me to even take his hat off... His head is the worst... Its very scaly and sometimes when you take some of it off it looks like worms under it... An it has like this brown yuky stuff on it and it also smells... His mother takes care of all his doctor appointments and will not let me get involved... I have done a lot of research on this and it would be nice if I had a doctor around this area that could help him... The doctor here has put him on many prescriptions which is for acne and things like that... Its very frustrating on him and on me... If anyone can help me or have any ways in which u can help me please contact me! Thank you so much!

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#19903 - 02/06/03 12:16 AM Re: Someone help us! (icthyosis Vularis)
Les Avakian Offline


Member

Registered: 08/13/00
Posts: 680
Loc: Fresno, Calif. USA 93705
Hello Brennyangel
Welcome to the men`s section of the ichthyosis bulletin board and help is on the way. If you would first contact our ichthyosis foundation FIRST (Foundation for Ichthyosis and Related Skin Types). Their number is 1-215-631-1411 or info@scalyskin.org.They might be able to refer your friend to a dermotologist who knows ichthyosis in your area.Also he might want to call Maureen Tierney who is the the program director of the ichthyosis support network. She can network you with vulgaris people.Also they can send you information on creams and lotions that will help him.Personally, I prefer Lachydrin 12% lactic acid, but there are many other fine creams on the over the counter market that will help. Everything is by trial and error, what works for some will not work as well for others.Good luck Brenny and you are an angel to be helping your friend as you have.Take care and by for now.
Sincerely,
Left Coast Les
_________________________
Les Avakian

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#19904 - 02/06/03 08:15 PM Re: Someone help us! (icthyosis Vularis)
rjbrown Offline
Member

Registered: 08/23/00
Posts: 39
Loc: henderson,ky,us
Just to add to what Les wrote. You need to be sure what type ich your bf has. he is not alone in his condition. I had the same problem as you stated but finaly outgrew it after some years. I have Lamellar Ichthyosis, 52 yrs. old. Good Luck, Randy

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#19905 - 02/06/03 09:15 PM Re: Someone help us! (icthyosis Vularis)
brennyangel Offline
Junior Member

Registered: 02/05/03
Posts: 4
Loc: Clinton Ny USA
Thank You both for replying to my posting... All we know is that its the Icthyosis Vulgaris or how ever you spell it... Not many doctors around here help us out... A lot of them confuse it with other things.. Thank you for writing me back!

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#19906 - 02/13/03 09:57 PM Re: Someone help us! (icthyosis Vularis)
Promiseland_dup1 Offline
Member

Registered: 02/13/03
Posts: 536
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 02:27 PM Re: Someone help us! (icthyosis Vularis)
ericjenes Offline
Junior Member

Registered: 04/13/03
Posts: 3
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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#19908 - 05/12/03 06:19 PM Re: Someone help us! (icthyosis Vularis)
Justine Offline
Junior Member

Registered: 05/12/03
Posts: 1
Loc: Yardley, PA, 19067
Tell your friend to have hope. My 13 year old son has ichthyosis over his whole body- but the scalp is the hardest. Try a product from the pharmacy called P&S Solution, It's funky, but works. Hello this is her son Tom. The aqua-Glycolic cream helped me alot it was a hassele puting up with it but by the time i was 12 it was just an everyday thing. It burned on cuts and rashes but like me if you don't scratch alot you have nothing to worry about. One of the things i found out that you should swim as much as possible and take long showers. I have a sauna suit that i wear to sleep after my showers and i wear a shower cap when i put on the creams for my scalp. You can order the sauna suits online through Delasco.

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#19909 - 09/22/04 11:29 PM Re: Someone help us! (icthyosis Vularis)
MIchelle Jessop Offline
Member

Registered: 09/22/04
Posts: 11
I have to agree with the Holistic approach. Doctors don't really know what is best for everybody. Have you ever considered essentail oils? I have been using them on my son for couple of years now, and I love them. Not just any essential oils, but thereputic grade essential oils. If interested in checking them out log on to www.youngliving.us check out Lavender oil, melrose, Jasmine, sandalwood. Also, maybe try some blends to help with emotional well being. Like Valor, Joy, Harmony.

You won't be sorry by checking it out. If you want futher info just let me know. Email me @ dmichellesemail@yahoo.com

Good luck,
Michelle

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#19910 - 11/21/04 07:44 AM Re: Someone help us! (icthyosis Vularis)
Znapperhead Offline
Junior Member

Registered: 11/21/04
Posts: 4
Im a 31 year old man(?) living in Oslo, Norway. I've been using neotigason for my ich. vulg for the past 4 years, and I have very few negative side-effects. I think the only one I've got now is dry skin [img]http://www.ichthyosis.com/ubb/smile.gif[/img] I do use lots of omega3 and similar oils in capsules along with vitamines and stuff, and I believe this is helping me alot regarding the dry skin...

I wouldnt consider NOT using neotigason - Never been happier since I can remember.

Ps
Anyone from Norway around in here?

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#19911 - 12/16/04 06:56 PM Re: Someone help us! (icthyosis Vularis)
Smiley Offline
Junior Member

Registered: 12/16/04
Posts: 1
Loc: Oslo Norway
Im 33 years old and also live in Oslo(Like Znapperhead). I see there are a lot of different solutions for everybody, some work, some don't. My experience is vivid and not very solid. By that I mean I dont see a certain path for what really helps me regarding my Ichtyyosis. I see that Justine has a success with swimming. For me it doesn't help - I get a drier skin when I swim.
I've been using Tigason earlier and now Neotigason for at lest 20-25 years. Lately I have experienced problems with my nightvision. I have seen on other threads that this is a problem for some other people too. Therefore I have stopped using this mediscine. The doctors har not definite that it is the medicine, but it stated as a sideeffect.

Over the years I have developed in a positive way. It was much worse when I was a kid. Nowadays it comes and goes. The only way to really see the illness is that I don't have much hair on my head, but today it is normal.

Usually I take solarium and that helps and I use to take Omega3, like Znapperhead.

Like others are saying, it is difficult to find a doctor that can give definite and expericend answers to my many questions. But I have learned to live with my illness and now that people who I love and care for doesn't care. And at the same time there are so many people who are much worse than I am.

I cant live without my Ichtyosis so I have to accept it. :-)

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