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Author Topic:   Introduction of a new member.
Carolien Maas
New member

Posts: 2
From:The Netherlands
Registered: Nov 2001

posted November 05, 2001 12:45 PM     Click Here to See the Profile for Carolien Maas   Click Here to Email Carolien Maas     Edit/Delete Message   Reply w/Quote
Hi everybody,

Last week I found this site on the net and I was happily surprised to find such a big and lively board about ichthiosis.
I immediately subscribed and here you find my first message!

My name is Carolien and I live in Haarlem, in the Netherlands. Since birth I have a special form of Lammelar ichthyiosis which I believe is called in englisch "bathing trunk distrophy" I was born (30 years ago) a collodion baby and at that moment nobody at the hospital had ever seen anything like it so they actually thought I would die. When they (the doctors) contacted a derm from a academical hospital, they learned it was ichthyosis and I was immediately put into a couveuse (is this an english word??). The effect this shock had on my parents(the fact that the doctors told them that there first born would probably die) is unbelievable.

Only two years ago I learned which type of Ich. I had and I seem to be the one and only white dutch female to have this type (in some ways I'm very proud of that - I'm 1 in 16 milion - so I'm very special!!!)

I feel very lucky for an other reason that I have the bathing trunk-type, becouse it is a very mild type. The scales I have are not so thick and are only presented on my scalp and on my trunk (like wearing a bathing suit with turtle neck with matching bathing cap. When I was a child I was treated with propyleneglycol and a creme which contained urea. But since it did not really help me and the propyleneglycol gave me fevers my parents stopped this treatment. I lived on for several years until I found that there was a derm. specialized in ichthyosis and I went to see him. He was happliy surprised to see mee, becouse I was the first dutch white female with the bathing trunk-type who came to see him. He told me of a publication of a study done in South Africa in 1975 and of about three other cases he knows about (all male of wich two are black men).
Since then I go to see him every six months.
Because I don't really have a problem with my Ich., only I "can't" wear certain clothing. like for example shirts or blouses that show a little cleavage (I wanna be sexy too!!!), I find the irritation from the sticky creams worse than the fact that I "have to" wear shirts with a turtle neck or "have to" close my blouse to the top button.

I'm searching for a "simple" way to reduce the scales, like a showering gel or oil and I hope to find some tips at this site...
And I hope to find other dutch people who have experiences in our country with for example body-treatment-centres...

Oops my time's up!
I have to go...
You'll certainly hear from me again and I look forward to reading your replies!

=)

Greetings to everyone!
Carolien.

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Laura Phillips
Administrator

Posts: 424
From:Detroit, MI
Registered: Aug 2000

posted November 05, 2001 02:47 PM     Click Here to See the Profile for Laura Phillips   Click Here to Email Laura Phillips     Edit/Delete Message   Reply w/Quote
Hi Carolien!

I'm so glad you found us. Welcome!

Many of us are based on North America, however, we've got people all over the world that read this board and participate. We'll be looking forward to hearing more from you,

Warmest regards,
Laura

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Sofie
Member

Posts: 114
From:Switzerland / USA
Registered: Jul 2001

posted November 18, 2001 06:34 AM     Click Here to See the Profile for Sofie   Click Here to Email Sofie     Edit/Delete Message   Reply w/Quote
Hello Carolien

It is great to 'meet' someone from Europe here on the board. The two of us live quite close to each other so to speak: I live in Switzerland...

On this site you can find many hints how to reduce them. Either on the Bulletin Board or on the link 'Helpful Hints' on the main page. To reduce scales I use a pumice after soaking my skin with warm water (long shower or bath). If you have a mild form a wet washing cloth might do the job already.

I have Ichthyosis since birth too but am still working on finding out which type it is. I will have a biopsy in January. What I can say is that I do not have such a mild form as you have since my whole body is covered. I take Neotigason since many years which is a great relief.

Best wishes, Sofie

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Chandra
Member

Posts: 668
From:Beaverton, OR
Registered: Nov 2000

posted November 21, 2001 01:55 PM     Click Here to See the Profile for Chandra     Edit/Delete Message   Reply w/Quote
Hi folks! I too have Lamellar Ichthyosis. In Latin it translates as "dry scaly fish skin." Or at least that's what I've been told. I must apologize in advance. I typically write very long replies, but I try to pass on good information whenever I can.

For reducing scaling, well, that varies per person. Some people use a lot of the alpha hydroxy formula lotions, others use lotions with a lactic acid base like Lac Hydrin. I use almond oil in my bathing water or else a bath oil/body wash with an oatmeal base, then petroleum jelly after I'm out of the water but my skin is still wet. I use Aveeno soap, another oatmeal based item. I have found that almost any natural nut oil works better than any other type of bath oil, but as it's so spendy that's why I also use the oatmeal based stuff.

The key to preventing scaling is to do everything you can to keep your skin moist. Some things you may only need to do once or twice a week to help your skin improve. Some of those things might be:

Wear a vinyl exercise suit for a few hours immediately after bathing and applying your preffered moisturizing lotion or ointment. A vinyl suit is usually called a "sauna suit" in American English. Many stores that carry sport supplies have these. You can order them off the internet too from here: http://store.yahoo.com/titleboxing/vss.html This a store called "Title Boxing." They do ship products all around the world. It costs $10 in US dollars, which is pretty standard for what the stores in the USA charge.

If you don't want to order a suit, you can always do the same thing with plastic wrap. Just bathe/shower, apply your lotion or ointment and then wrap the affected body part in plastic wrap like you use to protect food.

Some people use a pumice (lava rock) stone to scrub away at the scaling. I'm sure if you browse around the web site, there are other techniques you can read about. So you know, yes, I can wear tops that show cleavage, etc., but I must always use sunblock on any skin that is exposed. My case, even though it is Lamellar Ichthyosis, is usually considered very severe. So, if you have what's considered a mild condition, some of my techniques may be a little too much for you. However, I'm confident that if I can improve my skin and the peeling, you should be able too.

That's wonderful that you found a dermatologist with some knowledge about Ichthyosis! Welcome to our community and don't ever hesitate to ask questions or offer some of your own knowledge and opinions.

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Carolien Maas
New member

Posts: 2
From:The Netherlands
Registered: Nov 2001

posted November 22, 2001 04:27 AM     Click Here to See the Profile for Carolien Maas   Click Here to Email Carolien Maas     Edit/Delete Message   Reply w/Quote
Hi,

Thanks for all the helpfull tips! But, as Chandra already imlpied, becouse of the mildness of my ich most of the techniques are a little too much for me. I did however order a bottle of Dermal Therapy which I foud on the page with body cream products. I received it last saturday and it looks like it's working for me already!

The scaling process of my skin knows fases - like most of you also write about - First a thin layer appears, which grows thicker and at the end of the cycle the scales come a bit loose. I mostly try to get all the scales off when thy are a bit loose, becouse else, the new layer grows unther them and the total layer gets much thicker.

I was lucky that at the moment I received the bottle of Dermal Therapy, my skin was at the end of the cycle where most of the scaling was coming loose. Since I started to apply the cream twice a day all the remaining scaling is slowly coming off and I hope that the new layer will or be very thin or maybe not form at all !?!

Wishfull thinking maybe? Time will tell! I'll keep you informed!

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