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#28604 - 08/29/12 10:41 PM dermatolgists
taj Offline
Member

Registered: 02/01/10
Posts: 10
is there any listing anywhere of Dr.'s who are familiar enough to pinpoint what type of Ichthyosis I have. I only sweat on my head, and other things in discussions and reading (red at birth, etc.) lead me to Lamellar, but it's only a guess. At 62 years old, I would really like to know.

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#28608 - 08/31/12 10:59 PM Re: dermatolgists [Re: taj]
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
Your best bet is to call FIRST (firstskinfoundation.org) and ask them for a reference to someone in your area. If you're in a major city, there is probably someone sort of close by. Your regular doctor could also submit your info to the tele-ich program and the medical team from FIRST's advisory board would look at it.

A third thing you might look into is a research study at Yale where they are doing free genetic testing in exchange for a blood sample and a background history and some pictures. Contact brittany.craiglow@yale.edu if you're interested.
_________________________
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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#28609 - 09/03/12 06:37 PM Re: dermatolgists [Re: taj]
DJ.... Offline
Member

Registered: 05/12/12
Posts: 35
Jennifer - Are you aware of any such studies going on in the UK? I'm also keen to know exactly what type I have and am willing to be a guinea pig.


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#28612 - 09/06/12 02:02 PM Re: dermatolgists [Re: taj]
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
Offhand, I am unaware of research going on in Europe. I'd give the ISG a call and see if they know more.
_________________________
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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