Log In Sign Up

Introducing myself as well! :)

Forum: Skin Disorders


Welcome to the JustMommies Message Boards.

We pride ourselves on having the friendliest and most welcoming forums for moms and moms to be! Please take a moment and register for free so you can be a part of our growing community of mothers. If you have any problems registering please drop an email to [email protected].

Our community is moderated by our moderation team so you won't see spam or offensive messages posted on our forums. Each of our message boards is hosted by JustMommies hosts, whose names are listed at the top each board. We hope you find our message boards friendly, helpful, and fun to be on!

Reply Post New Topic
  Subscribe To Skin Disorders LinkBack Topic Tools Search this Topic Display Modes
May 30th, 2007, 07:31 PM
glasscandie's Avatar What I make is what I am
Join Date: Feb 2005
Location: Near Washington, DC
Posts: 15,982
Send a message via AIM to glasscandie Send a message via Yahoo to glasscandie
My name's Courtney, and I'm married to Dmitry. We have one daughter, a 20 month old named Julia. Julia was born with Netherton's Syndrome, which is a pretty rare type of ichthyosis, which is genetic. I think the incidence for her syndrome is about 1 in 500,000. Ichthyosis is a term for a variety of different skin disorders, Netherton's (NS) being one of them. The way it works is, the parents have to each have a recessive NS gene (which is pretty abnormal in the first place), and then those two genes have to join together when a baby is conceived (it's about a 25% chance).

Anyway, the symptoms of NS are:
-brittle hair because of a shaft defect...often women with NS wear wigs. DD's hair actually seems to be growing, so we'll see how that goes.

-failure to thrive...DD was *severely* FTT when she was under a year old. She's been off and on supplementally NG tube fed since she was 8 months old, and is just now catching up to the growth chart for where she should be at. There's a variety of reasons for this with NS.

-eczema-like spots...that's primarily what DD has now, and really only on her scalp and shins.

-a general "red" skin tone...that's very true, it always looks like she's gotten a little too much sun!

-peeling...as odd as it sounds, the entire top layer of DD's skin would peel off, much like a sunburn, when she was really little. Now it doesn't really do that.

Julia definately has a mild case. I've met with a few older people with NS at a conference last summer, and they all said that her skin looked amazing; our new dermatologist literally didn't believe me when I told him she had NS. So that's good news, in any case.
I predict a riot.
Reply With Quote
May 30th, 2007, 07:44 PM
LadyTkachenko's Avatar *~Hoping For A XMAS BFP~*
Join Date: Jan 2006
Location: WA
Posts: 13,620
Hi Courtney! Welcome! I am glad I am not alone. I am looking forward to getting to know you and your little girl!
Michele 34 wife to Vladimir 33

Proud Mommy to Malachi, Trinity, Anastasiya, Nathan and Kateryna

Hoping for a Christmas BFP!

Reply With Quote

Topic Tools Search this Topic
Search this Topic:

Advanced Search
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off

All times are GMT -7. The time now is 11:17 PM.

Powered by vBulletin® Version 3.8.9
Copyright ©2000 - 2017, vBulletin Solutions, Inc.
Search Engine Optimization by vBSEO 3.6.0