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#28724 - 12/07/12 12:09 AM questions.. so many!
cat Offline
New member

Registered: 12/06/12
Posts: 3
Hi! I'm looking for answers, I don't know if somebody can help me. My best friend delivered her baby a couple of days ago and the baby boy has ichthyosis. I didn't know what it was when my friend told me, so I went on internet to have infos but it did not answered all my questions. I'm just asking for myself by the way, I don't want to scare my friend which is a bit depressed as she's tired and has a hard time accepting her baby's difference (something I can understand as my own daughter has a rare disease). So, I'm wondering if usually ichthyosis is only a skin disease or if it implies other problems (physical or mental). I must specify, I guess it will help you define the kind of ichthyosis he has, that his skin is not that bad, but he also have special ears (pretty big and soft) and a crown of hair (no hair on the front and a little bit of hair around the head, about a inch long). Can you tell me what kind of ichthyosis he has? do you think he's going to have mental and/or physical retardation? hope the best to all of you and thanks in advance.

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#28728 - 12/08/12 05:15 PM Re: questions.. so many! [Re: cat]
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
Ichthyosis is only very rarely associated with mental retardation. There are a few very obscure types where the ichthyosis is part of a syndrome. From your description, I couldn't even begin to guess what type you are dealing with.

I would get in touch with the Foundation for Ichthyosis and Related Skin Types. They can direct you to a knowledgeable doctor in the area that can help you first hand. For parent resources, there's here and a fairly active group on facebook. There are several blogs written by parents - blessedbybrenna.blogspot.com, confettiskin.com, carlyfindlay.blogspot.com, and several more. There are well-known experts in Chicago, San Francisco and New Haven, and many practitioners besides that in all sorts of cities that are familiar with the condition.
_________________________
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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