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#25265 - 10/06/09 10:51 AM Any grandmothers still active?
Julia's Grandma Offline
Member

Registered: 07/25/06
Posts: 35
Loc: Cranford, NJ - USA
Hi,

I haven't been on the boards in a while. I was wondering if there are any grandmothers still active on here. I just needed to talk and know another grandmother dealing with ichthyosis would understand like no other. Thanks.

Stephanie
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Stephanie

I GoodSearch for the Foundation for Ichthyosis and Related Skin Types.



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#25268 - 10/07/09 10:53 AM Re: Any grandmothers still active? [Re: Julia's Grandma]
greatful Offline
New member

Registered: 10/07/09
Posts: 1
Hi.
My name is Gayle and I am new to this registry. I have a granddaughter 16 months old now who was diagnosised with lamellar. I have been looking to correspond with someone who understands what we are going through and may be able to help in someway. Just need some support. It has really been rough for us. It has been so hard for me to except this. I get so angry that she had to have this illness. I feel so sad for her and worry so much about her and what she will have to go threw in life. I am the one that always has to fix everything for my children and there is no way I can help it go away for her. I feel so helpless. Does it get easier. I feel like I can't free myself from the worry of it all. She is so precious to me. I just don't know what to do. Gayle

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#25269 - 10/07/09 01:13 PM Re: Any grandmothers still active? [Re: greatful]
Julia's Grandma Offline
Member

Registered: 07/25/06
Posts: 35
Loc: Cranford, NJ - USA
Gayle,

Thanks so much for responding to my post! I can relate exactly to your feelings. My granddaughter just turned 4 and has Netherton's syndrome. I can so relate to what you say: I am the one that always has to fix everything for my children and there is no way I can help it go away for her. I felt the same frustration at being helpless to fix this. It does get easier. In the beginning, I couldn't stop thinking about it and worrying about it. The great thing is as your granddaughter grows and your relationship develops and you fall even more in love with her you won't think about the lamellar so much. Do you want to email privately? Maybe we can talk sometime? Where are you from? I am in New Jersey. Email me: Stephanie.Dexter@kraft.com. Look forward to hearing from you!

Stephanie
_________________________
Stephanie

I GoodSearch for the Foundation for Ichthyosis and Related Skin Types.



Raise money for the Foundation just by searching the internet with GoodSearch - www.goodsearch.com- powered by Yahoo!

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#27945 - 09/18/11 05:27 AM Re: Any grandmothers still active? [Re: Julia's Grandma]
bombermanabc Offline
New member

Registered: 09/18/11
Posts: 1
Good..topic.
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ผลบอล-sbobet

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#28019 - 11/03/11 07:05 PM Re: Any grandmothers still active? [Re: Julia's Grandma]
Stephanie7 Offline
New member

Registered: 11/03/11
Posts: 1
Loc: New York
Hi , My name is also Stephanie. I have a granddaughter with Ichthyisis. She has KID. she is only 4 months old. I am new to this. Just talking about it with someone else I believe could help me

Thanks

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#28021 - 11/03/11 09:26 PM Re: Any grandmothers still active? [Re: Julia's Grandma]
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
hello! My name is Jennifer and I'm in Richmond. Welcome to our party.

Let me send you a PM and I'll put you in touch with someone in your area or a parent of a KID syndrome child.
_________________________
Jennifer
Ichthyosis-en-Confetti Type 2
Husband, Nathan - 10, Elliot - 7, Oliver - 4, all affected.
I also have an unaffected daughter, age 8.


email: jennifer at confettiskin dot com
facebook - find me on "ichthyosis mommy spot" or "friends of ichthyosis"

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