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#15562 - 04/22/01 10:57 PM lamellar
anne majakari Offline
Junior Member

Registered: 04/22/01
Posts: 1
Loc: orebro, sweden
my little brother (almost 1 month old) max has lamellar and me and his parents are of course eager to know more about it as there is so little information about it. so if you have similar experiences or can help us with anything, your info is welcome! we want the best for max and want to do our best to help him grow into a strong individual and educate ourselves about lamellar.
thank you!

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my name is anne and i'm 31 yrs old, living in sweden. i just had a brother named max who has ichthyosis lamellar and there is so little information here and the doctors know very little about this. so me, and max's parents are very interested in getting in touch with anyone that could give som answers or any kind of support about this condition. this is totally new to us so we are newbeginners and have so many questions. max was born on march 27th this year and a very much welcomed baby!
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my name is anne and i'm 31 yrs old, living in sweden. i just had a brother named max who has ichthyosis lamellar and there is so little information here and the doctors know very little about this. so me, and max's parents are very interested in getting in touch with anyone that could give som answers or any kind of support about this condition. this is totally new to us so we are newbeginners and have so many questions. max was born on march 27th this year and a very much welcomed baby!

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#15563 - 04/26/01 10:54 PM Re: lamellar
sasiewelshlasie Offline
Junior Member

Registered: 04/08/01
Posts: 3
Hi anne,
im from the uk and I have lamella. When I was born the doctors were very confused to what I had, they told my parents I would not be able to walk, see and I would need 24hr care. How wrong could they be!! I can walk , see and look after myself andI am currently at university.
My skin is a million times better now than when I was a baby, so I hope your brother will be the same!
Try not to worry too much,Im sure he will be fine!
Sarah

Quote:
Originally posted by anne majakari:
my little brother (almost 1 month old) max has lamellar and me and his parents are of course eager to know more about it as there is so little information about it. so if you have similar experiences or can help us with anything, your info is welcome! we want the best for max and want to do our best to help him grow into a strong individual and educate ourselves about lamellar.
thank you!


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#15564 - 04/27/01 02:20 PM Re: lamellar
Solomon Rumicha Offline
Member

Registered: 08/15/00
Posts: 49
Hi Anne,

We went through the same thing when my son was born. This site is excellent place to get information and to educate yourself. If you need specifc help, please let us know if we can help.

Solomon
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solomon rumicha

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#15565 - 04/30/01 09:46 PM Re: lamellar
Chandra Offline
Member

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

I am 28 years old and have lamellar. I have heard such wonderful things about medical care in Sweden. Your brother is in good hands with such a caring family and medical care system.

Feel free to ask questions of me, too.
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I am female, and was born in 1972 with Lamellar Ichthyosis.

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#15566 - 07/17/01 09:53 PM Re: lamellar
Barto Offline
Junior Member

Registered: 07/17/01
Posts: 1
Loc: Gouda
Dear Anne,
This site is dominated by North American contribution. I have two sons (5 and 10 yrs) with laminar ichtyosis in the Netherlands and found the best help with a dermatologist in a specialised child hospital in Rotterdam. Treatment suggestions are in this site, but many products are not available in Europe.

We use base cream - mixed by the pharmacist -for the whole body (20% vaselin and 80% cream lanette) and the same cream with 3% ureum for hands and feet. You can try to increase the ureum level, but max 10% is difficult to keep (cool) and smells more. Ureum can cause some pain at sensitive skin locations.

In bath we use a very good (and expensive bath oil) called Nutraspa from Galderma.

Feel free to ask more if needed.

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Barto Cleton
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Barto Cleton

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