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#10984 - 03/08/06 03:58 PM Re: Get to know each other?
Heather Freeman Offline

Registered: 03/07/06
Posts: 7
Loc: Davenport Florida
Hello everyone !!! My nane is Heather my boyfriend's name is Brandon I have three children by my husband who i am no longer with. My son is 9 his name is Jacob my daughter is Erin she is 8 and Madeline who is 5 and she is the one with E.H.K. Epidermolytic Hyperkeratosis. My husband nor i have it or my oldest two children. We live in Florida and she does blister up quiet a bit from the heat. She thinks she is the only one who has this since she has never met any other children with this condition. We are going to try to get to Atlanta but we are in the process of moving to Orlando. We have a web page if anyone would like to see my family it's

Thank's for letting me share my life with you....

#10985 - 03/09/06 02:50 PM Re: Get to know each other?
CShell Offline

Registered: 11/10/05
Posts: 1193
Loc: Fort Meade, MD
[QUOTE]We live in Mount Laurel NJ, and we are hoping to move in the next few months to a bigger house. [/QUOTE]

I grew up in NJ! [img][/img] Was born in Rahway, lived in Linden, and then moved to Cranford when I was in 9th grade (all in the Woodbridge/Colonia area). Don't know if you know any of those towns lol Mt. Laurel sounds familiar, maybe north of Cranford? Is it near Basking Ridge?
Mom to Julia

#10986 - 03/09/06 07:46 PM Re: Get to know each other?
jrmiss86 Offline

Registered: 06/07/05
Posts: 378
Loc: Marlton, NJ, USA
those towns sound fammilar to me as well. We live in Burlington County. If I am correct those areas are all north Jersey. My husband works in NY three days a week or so, So I bet he knows, when he is done working i will ask him.
Mom to:
Alex (xli and Kallmans - 2/3/05)
Liz (3/16/07)

#10987 - 03/18/06 03:46 AM Re: Get to know each other?
lsteven Offline

Registered: 03/08/06
Posts: 18
Loc: toledo, OH
Hi my name is Sarah, i'm 22. My husband John and I just had our fist child Zoey Belle. She is 2mths old and was originally diagnosed with Harlaquin.(God works miracles looks like she has less severe form)I was going to school for teaching focusing on special needs children. Before Zoey I was working at a Vet Hospital. I love animals! I am also into jewelry making and scrapbooking. Both of which it seems i have less and less time to spend doing. Thank you all so much for being so helpful, being a first time mom is scary enough without the icthyosis being an issue! You all are very supportive.

#10988 - 03/18/06 10:45 PM Re: Get to know each other?
Butterfly.1 Offline

Registered: 03/16/06
Posts: 17
Loc: Canada
Hello everyone! What a great idea!!!!!

My name is Tania and I am from Toronto, Canada. I am 30 and my hubby is 32. We have been married for almost 5 yrs. We have a 5 months old baby girl, who is our first.

I do not have the actual diagnosis yet [img][/img] (waiting to see the doc and hopefuly get some conclusive tests), but both my daughter and I seem to have IV. Since IV is a dominant trait, I assume she got it from me [img][/img] and at times feel very guilty for passing it on to her (not that I have any control over it).

We do not have any pets, but we love animals. One of these days we will get our fish tanks running again and start fish breeding. It used to be a lot of fun (and cleaning lol)

My hubby is a computer geek too!!! Actually we both have Computer Sience degree, though I decided after a while that I don't like programming anymore and now hoping to get into Human Resources. I am half way done getting my post graduate certificate in HR (just hope I have time to take the rest of classes to complete it).

I never met anyone with IV and thought I was the only one suffering from it, but now thanks to www I realise that there are people who have it out there and hope to share our stories and things that worked for us.

[This message has been edited by Butterfly.1 (edited March 18, 2006).]

#10989 - 03/20/06 01:54 AM Re: Get to know each other?
thehodgees Offline

Registered: 01/29/06
Posts: 130
Loc: Woodstock, ON, Canada
We are practially neighbours!!! WOW!!!
Glad to meet you,
Sarah, Craig, Matt and Ema
Craig and Sarah Hodgkinson (aka Dad and Mom to Matt and Ema)
Ema has been diagnosed with Congenital Ichtyosiform Erythroderma (CIE)

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