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#15595 - 06/18/01 02:39 PM which type do I have?
Suzanne Offline
Junior Member

Registered: 06/18/01
Posts: 3
Loc: New Brunswick, Canada
Hi everyone. Could someone tell me how I can find out which type of ichtyosis I have. I think I have lamellar but I'm not sure. I can't find anywhere which will explain the different types. Thanks.

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#15596 - 06/18/01 06:18 PM Re: which type do I have?
Laura Phillips Offline


Member

Registered: 07/31/08
Posts: 12
Loc: Detroit, MI
Hi Suzanne,

Welcome! Glad you found us! [img]http://www.ichthyosis.com/ubb/biggrin.gif[/img]

Finding out which type of ichthyosis you have (or even if it's something other than ichthyosis) really requires the help of a dermatologist. It's very difficult to self-diagnose, just because the different types of ichthyosis can present so differently. Plus, you really need a biopsy and possibly molecular diagnostic testing to confirm a diagnosis.

You can check out FIRST's website (the Foundation for Ichthyosis and Related Skin Types) at www.scalyskin.org and look under "Types of Ichthyosis." They give some good information and drawings of the different types.

FIRST can also help you find a dermatologist who has some familiarity with ichthyosis. As you've probably gathered from earlier discussions here, you may have very different experiences with any given derm depending on how familiar they are with ichthyosis (re: If they've never seen it before and aren't familiar with it, you probably aren't going to get the savviest diagnosis or advice from that derm. Not any kind of slam on the dermatology profession/specialty, just a fact of life. You are a consumer, even when it comes to your skin. Treat it like shopping for any other service--go find a "service provider" (i.e. derm) who has the right experience and expertise to give you the best input.)

Also, check out the National Registry for Ichthyosis and Related Disorders at www.skinregistry.org Through the enrollment process, they can also help you find a knowledgeable dermatologist who can diagnose you. Additionally, the Registry offers a means for measuring cholesterol sulfate to confirm X-Linked Recessive Ichthyosis (at no cost to the person enrolling), as well as molecular diagnostic testing to identify specific mutations in enrolled individuals with certain specific disorders where mutations limited to (a) particular gene(s) have been identified.

Of course, X-linked only affects men, so that wouldn't apply to you. But enrollment process for the Registry would be another great source of help.

I personally have only had a biopsy; I'm waiting my turn for the molecular testing through the Registry. Another great reason to enroll, for all you guys that haven't yet!

Hope that helps, Suzanne. I'm sure other people will have other ideas too.

Laura

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