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#11404 - 03/26/06 10:50 AM Thought I would jump in here and join the group
mom Offline
Member

Registered: 03/22/06
Posts: 8
Loc: N.C.
Hi there,

Well, it is so good to know that I have found other people who are like my son and I. I am 38 years old, and I know no one around here where I live that has this at all.

I have just joined the Ichthyosis Foundation and I am trying to look into starting a support group around here. Does anyone here know how I would go about doing something like this?

I have called the Hospital. I do not know if they can help or not...but I am going to give it a try. If it works, I thought I would set up the meeting's for every Tuesday night at 7:00 Pm. Maybe it could last from like 7 to 8:00 Pm. It all depends on how many people show up.

I thought about checking with my local NewsPaper. I think I can put something in it for free, I'm not sure...but it wouldn't hurt to ask them. Worse they can say is no.

I am also thinking of going back to the Derm Dr. again. I am going to find out this time what type I have...but I kind of think that it is Vulgaris...seeing how that is the main one that is congenital & the fact that it is more or less very dry skin, with very thick fish scales on my feet.

Ok well, you all have a great day!
God Bless
Love & Hugs



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mom
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mom

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#11405 - 03/27/06 04:38 PM Re: Thought I would jump in here and join the group
skittles71 Offline
Member

Registered: 01/16/06
Posts: 283
Loc: Catawba North carolina
Glad to have you join.Hope you enjoy being here and if you have questions just post them and we all try to help out.

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#11406 - 03/29/06 03:24 PM Re: Thought I would jump in here and join the group
thehodgees Offline
Member

Registered: 01/29/06
Posts: 130
Loc: Woodstock, ON, Canada
Dear Mom...alright, I feel silly writing that, but anyways...
Hi! My name is Sarah and my DD, Ema, was born with what we have been told is CIE. She has yet to have a biopsy done so CIE is the dermatologist's best guess.
She is 19 months.
If you are in North Carolina I know two lovely ladies that are probably in your neck of the woods. Skittles71 and BeepBeepinaJeep are in NC...you are so lucky!
I am at home 6 days a week (only work 1) and always here if you have any questions or just want to chat.
My email is thehodgees@yahoo.ca.
Welcome to our loving community!
Hope that you are planning on going to the conference...in which case...SEE YOU THERE!!!
Love,
Sarah (Craig, Matt and Ema)
XO
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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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#11407 - 03/30/06 06:51 AM Re: Thought I would jump in here and join the group
CShell Offline
Member

Registered: 11/10/05
Posts: 1193
Loc: Fort Meade, MD
Hi! Sorry for taking so long to respond!

I'm Courtney, and my daughter Julia (6 months) has Netherton's syndrome. Welcome to our group! I'm just amazed at how much information floats around this place, and I'm totally addicted to the ladies in the Mom's Group! [img]http://www.ichthyosis.com/ubb/smile.gif[/img] So, welcome!
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Courtney
Mom to Julia

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