Posted by: taj

dermatolgists - 08/29/12 10:41 PM

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.
Posted by: Hearsay

Re: dermatolgists - 08/31/12 10:59 PM

Your best bet is to call FIRST ( 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 if you're interested.
Posted by: DJ....

Re: dermatolgists - 09/03/12 06:37 PM

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.

Posted by: Hearsay

Re: dermatolgists - 09/06/12 02:02 PM

Offhand, I am unaware of research going on in Europe. I'd give the ISG a call and see if they know more.