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#26641 - 07/20/10 10:01 PM Seeking a network with other parents of lamellar
lexilove Offline
New member

Registered: 04/16/10
Posts: 4
Loc: Eureka, CA
I'm a new parent to a daughter born with lamellar ichthyosis in March 2010. I'm hoping to meet other parents with infected children. I live in Eureka, California. We are five hours north of San Francisco on the coast. If anyone is interested in sharing or giving advice, please contact me or leave your contact information.
Thanks,
Suzanne

_________________________
My daughter was diagnosed with lamellar ichthyosis and we would appreciate any information that we can get.

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#26655 - 07/22/10 04:17 AM Re: Seeking a network with other parents of lamellar [Re: lexilove]
Meghan Offline
Member

Registered: 07/05/09
Posts: 13
Hello!

Our daughter will be two in a couple of weeks and is diagnosed with lamellar. We live in the LA area and would love to chat.

Meghan
_________________________
Meghan

Mom to Emma Joy ~ 2.5 years old affected with LI and to Austin ~ 6 months also affected with LI

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#26815 - 08/24/10 02:14 AM Re: Seeking a network with other parents of lamellar [Re: Meghan]
where2be08 Offline
Member

Registered: 02/22/08
Posts: 13
Loc: nj,USA
My brother who is now 15 has severe lamellar and we have been using many many different creams throughout the years to help keep his skin in good condition

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#26906 - 09/22/10 04:21 AM Re: Seeking a network with other parents of lamellar [Re: where2be08]
MonkeyMama Offline
Member

Registered: 04/17/10
Posts: 44
Loc: Georgia
I'd love to chat with you! My daughter is 2 and a half and has Lamellar. We live in Georgia.
_________________________
Sam
Mama to Cate (1/30/08), our little monkey.
Collodian Baby/Lamellar Ichthyosis

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#26908 - 09/23/10 08:59 AM Re: Seeking a network with other parents of lamellar [Re: MonkeyMama]
KimNL Offline
Member

Registered: 07/31/08
Posts: 146
Loc: Holyrood, NL, Canada
My daughter, Casey, is 2 and 1/2 - more than happy to share.
Still up in the air if Lamellar or CIE. The gene which has mutated ICHTHYIN can cause either and she exhibits symptoms of both.
Cheers
Kim
_________________________
Kim
Mom to Casey born Feb 17/08(?LI/CIE), Sara born Feb 18/06, and Kaitlyn born July 2/03
Casey has been tested positive for a genetic mutation in the ICHTHYIN gene (which is indicative of either LI or CIE)


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#26916 - 09/23/10 08:50 PM Re: Seeking a network with other parents of lamellar [Re: KimNL]
Ivy's Mummy Offline
Member

Registered: 10/31/08
Posts: 97
Loc: England
Hi Suzanne,

my daughter is 2 and has Lamellar. Although we are in the UK I would be more than happy to share our experiences.
_________________________
Emma

4 year old girl with Lamellar Ichthyosis

Baby girl unaffected

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#26917 - 09/24/10 05:26 AM Re: Seeking a network with other parents of lamellar [Re: Ivy's Mummy]
MonkeyMama Offline
Member

Registered: 04/17/10
Posts: 44
Loc: Georgia
Wow! It's so neat to see so many others who are close to Cate's age who are also Lamellar (or CIE, which is how Cate was originally diagnosed). Where are all of you located? Where are you in the UK, Emma?

I ask because we know that Georgia is not the best place for us to live with Cate's LI and are searching for a better place to be. Is anyone in a good temperate climate?
_________________________
Sam
Mama to Cate (1/30/08), our little monkey.
Collodian Baby/Lamellar Ichthyosis

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#26922 - 09/24/10 01:32 PM Re: Seeking a network with other parents of lamellar [Re: MonkeyMama]
cschaap Offline
Member

Registered: 07/06/09
Posts: 71
Loc: Crown Pt., Indiana
Hi, my son just turned 16 months. He has been diagnosed with Lamellar. We live in Crown Point, Indiana about 40 min. south of Chicago. We do our best to try and just keep it simple, maintain it as best we can and let him be a kid:)
If I can help in any way I would be glad too!

Candace
_________________________
My name is Candace. My son, kenny was born May 19, 2009 diagnosed with Lamellar Ichthyosis. My daughter Chloe was born June 4, 2011 unaffected.

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#26923 - 09/24/10 05:39 PM Re: Seeking a network with other parents of lamellar [Re: cschaap]
Ivy's Mummy Offline
Member

Registered: 10/31/08
Posts: 97
Loc: England
Hi Sam
we live in Yorkshire. This summer was pretty warm (for England) and last winter was very cold. The extremes haven't really affected Ivy's skin however she does go red in hot weather but it's never that warm for long! We were in northern France in August and it rained for most of the time and Ivy's skin was the best it's been in ages!
_________________________
Emma

4 year old girl with Lamellar Ichthyosis

Baby girl unaffected

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#26924 - 09/24/10 10:55 PM Re: Seeking a network with other parents of lamellar [Re: MonkeyMama]
KimNL Offline
Member

Registered: 07/31/08
Posts: 146
Loc: Holyrood, NL, Canada
Hi Sam,
We live in Newfoundland, Canada. Living on the coast ensures moist air at all times and it is rarely, if ever, hot. We do have central air and humidity control in our home, though, which also helps.
We spent some time in Toronto this year and while Casey seemed fairly OK, the 30+ Celsius temps made her turn bright red if out to long and I thought she seemed drier than usual.
Our climate, though not warm enough for me :), seems perfect for her!
Take care
Kim
_________________________
Kim
Mom to Casey born Feb 17/08(?LI/CIE), Sara born Feb 18/06, and Kaitlyn born July 2/03
Casey has been tested positive for a genetic mutation in the ICHTHYIN gene (which is indicative of either LI or CIE)


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