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#15978 - 01/30/06 09:49 AM New to the Board
Kotick Offline
Member

Registered: 01/29/06
Posts: 205
Loc: Brisbane, Australia
G'day Folks,

My name is Jeff and I have Lamellar Ichthyosis - sounds like I have joined AA hahaha!! Anyways I am 28 years of age and live in Australia. I don't really have any real issues at the moment, but have done okies for myself in my career and am getting into the idea of doing some research about Lameelar Ichthyosis. Hence why I have come looking for what information is currently out there.

Anyways just thought I would say G'day!!!

Jeff

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#15979 - 01/30/06 04:47 PM Re: New to the Board
shandra Offline
Dakota's mom Lamellar
Member

Registered: 10/07/05
Posts: 349
Loc: Cape Coral, FL
Hi. I am fairly new to the board also. My son is only 4 months old. Not sure exactly what form he has yet tho. We had him at the Mayo clinic in Minnesota with a specialist in Ichthyosis, and she said he either has Lamellar, congential or normal. Can't wait to find out which one tho.
This board has been very helpful, just by reading the posts, there are great people on here that are so knowledgeable. There is a conference in June in Atlanta, Ga. Will you be coming to that?

It will be nice to get to know you here, and hopefully see you at the conference.

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#15980 - 01/30/06 11:09 PM Re: New to the Board
Kotick Offline
Member

Registered: 01/29/06
Posts: 205
Loc: Brisbane, Australia
I am not sure about the conference as of yet. Am relatively new to the concept of talking to others in the similar situations to me and have only just found out about the conference. Having said that, I am trying to adjust my commitments so that i can make the conference as it would be an awesome experience!!

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#15981 - 01/31/06 04:48 AM Re: New to the Board
thehodgees Offline
Member

Registered: 01/29/06
Posts: 130
Loc: Woodstock, ON, Canada
Jeff, I really hope you are able to make the conference. We are in the midst of "making it possible."
Sarah
_________________________
***********
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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#15982 - 01/31/06 06:30 AM Re: New to the Board
Francesca Offline
Member

Registered: 01/16/06
Posts: 94
Loc: Brisbane, Australia
G'day Jeff,

Brisvegas here! I am a new mum to Lucia(still in hospital at 106days old) who has Nethertons(and CIE)and am also new to this forum. However, the info I have gleaned from this BB has been invaluable so far - the doctors in Brisbane have no prior experience with NS or CIE - is it any better in Sydney? Anyway, welcome aboard and no doubt we will chat again,
Francesca

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#15983 - 01/31/06 07:44 AM Re: New to the Board
Kotick Offline
Member

Registered: 01/29/06
Posts: 205
Loc: Brisbane, Australia
G'day Francesca!

I used to live in Brisbane and still spend significant time there at times. I have found that the doctors in Australia have very little knowledge about ichthyosis, mainly due to the lack of opportunity to deal with it I guess.

All the best with Lucia, hope you have them home with you soon!!!

Jeff

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#15984 - 01/31/06 02:14 PM Re: New to the Board
immystique Offline
Member

Registered: 03/09/05
Posts: 271
Loc: Grand Junction, CO, USA
Hi Jeff!
Don't have much time to reply, gotta get to work, but just saying "Hi" and "welcome"!

I'm 26 w/ LI as well. I love your idea of doing research on LI. Will you be going into the "human" side of your research as well. Basically, the psychological/sociological side of having ich as well as just the physical stuff?
_________________________
If the grass looks greener on the other side, maybe it's time to start watering your lawn!

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#15985 - 01/31/06 10:18 PM Re: New to the Board
Kotick Offline
Member

Registered: 01/29/06
Posts: 205
Loc: Brisbane, Australia
G'day Mystique,

I have not yet defined the exact boundries for my plans, but I do agree that the "human" side of ichthyosis is probably important as the medical side. Having said that though, I think it is possible to utilise ideas from of similarly affected people with conditions, disabilities and injuries which make them look signifivantly different to "normal" and/or causes them discomfort. Food for thought...will just have to see where this road takes me!!!

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#15986 - 02/12/06 05:20 PM Re: New to the Board
thehodgees Offline
Member

Registered: 01/29/06
Posts: 130
Loc: Woodstock, ON, Canada
Jeff,
That's what makes the conference so appealing to my husband and me. While we appreciate the help that Ema's dermatologist has given us she does not have a child with Ichthyosis. She only knows the textbook side of Ema's world. We are looking forward to making touch with others about the important side of Ichthyosis...living with it. Again, we hope to meet with you at the conference.
Sarah (Craig and Ema)
(Matt's (4) staying at home...I don't think the conference could handle him!)
_________________________
***********
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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