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#16489 - 07/27/03 09:56 AM Questions???
Diane Albone Offline

Registered: 07/08/03
Posts: 38
Loc: Tongeren/Belgium
Hello it is me again,

I have EHK and i have been reading all the billboards but it makes me confused and what I would like to know what is a good cream, oil??? (something for are skin) I am from belgium so i am not shure i could buy everything here. I use plain vaseline and babyoil, maybe somebody has got something else for me to go and buy and try out???
Thank you !!! take care love Diane

#16490 - 07/28/03 03:39 PM Re: Questions???
Chandra Offline

Registered: 11/20/00
Posts: 707
Loc: Grants Pass, OR
Hi Diane,

Keith or Pauline might be able to give you some better ideas than what I have since I don't have EHK. I think they've tried Amlactin, Lachydrin and Neostrata products with varying success.

If you go to the main page of the web site, click on the product mall section and you'll see a listing of lotions and other things some people use.
I am female, and was born in 1972 with Lamellar Ichthyosis.

#16491 - 07/29/03 07:11 AM Re: Questions???
pauline5 Offline

Registered: 01/06/02
Posts: 913
Loc: Melbourne, Australia
Hi Diane,

Sorry I haven't posted my ideas in the last few days...been busy with Uni....I am just hesitant when I live in Australia, and worry that what I use might not be availabe in other countries...

Firstly, these days...I find that putting a good 1 cup of salt in a half filled bath, is the BEST thing I could be doing....It reduces the odor substancially, and it also seems to keep the scale very thinned down, my skin is almost looking normal, especially when I first get out of the bath...

However, if you already have very thick areas, like knees, and bends of arms...I use 12% lactic acid...Last time I did this, I wrapped my arms and legs up in food wrap (plastic) and then scraped it off...after about 12 hours...From then on...the salt baths have been more than sufficient, to stop it growing back to thick stages...and as it comes through, the salt helps lift it off...


The only creams I use on a daily basis, is an ointment called "50% liquid parrafin, in 50% soft white parrafin"...this is particularly for the cracked areas of my palms and soles of my feet...I put this on each night, before wearing cotton gloves to bed...

The only cream I apply to my skin when it is dry is called "cetrimide cream" which is a very soft white cream, which has 5% cetrimide anticeptic in it...I find it is also good to put onto sores and blisters, and I feel it hastens the healing period...
I put this cream on my face and neck daily, as a moisturiser...

Other moisterisers I have used in the past with success have been" Sorbolene ointment, and Glicerine...

The Vaseline you mention, I have used also...and that is really the same thing as the parrafin ointment I use...same look, and same texture...

But the Cetrimide cream, is nowhere near as greasy, so it is ideal to use during the daytime, when your hands get dry and cracked...and for your face...

That is about all I can think of right now...Please give the salt baths a go...but you need to have them daily, to really give the skin a chance to respond...and I am sure you will be pleasantly surprised, and will probably not need to worry about the heavy creams, such as Lactic Acid...

Take it easy Diane, and hopefully we can talk soon...
Love Pauline.

#16492 - 08/05/03 05:56 AM Re: Questions???
Glori Offline


Registered: 08/14/00
Posts: 499
Loc: Elk Rapids, Michigan
I have had very good luck with sesame seed oil. There are several brands out there now, Nutrageena being the more popular one.
Sometimes I even just sit down with a bottle of extra virgin olive oil from the kitchen when all else fails [img][/img]

#16493 - 08/05/03 07:46 PM Re: Questions???
Veronique Offline

Registered: 07/13/03
Posts: 24
Loc: Rheden, the netherlands
Hi Diane,
I am from Holland (as you know), and for my daughter we use cetomacrogol. We got it prescribed from the dermatologist, and find it a little less sticky then Vaselin. it tends to absorb just a little better. Also when she gets to grey we use a little thinnned acid lactic (but very cautiously, because sometimes it makes her blistering)and we recently found a peeling in the shower every once in a while makes a difference in the colour of her legs as well.

Maaike and Karlijn
Maaike and Karlijn


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