Re: Trichothiodystrophy

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Posted by Glori on August 03, 1999 at 18:43:11:

In Reply to: Trichothiodystrophy posted by O'Donnell on August 03, 1999 at 07:39:55:

It happens that though I know little about this disease, I have stumbled across some information for it before.
http://www.keratin.com/ag/ag013.shtml has a good definition and a few treatments mentioned for trichothiodystrophy.
http://sites.netscape.net/isamelamad is a page created by a boy who dedicates it to his three brothers who all died from the disease. He is trying to collect information and seems to genuinely want contact, and while the page is still under construction, you might want to get in touch with him.
And lastly, the National Institute of Health is holding a clinical trial for people of any age and race who have trichothiodystrophy. While you may not want your daughter to participate, they might send you some more information or have some on their web site. The clinical trial is listed at:
http://clinicalstudies.info.nih.gov/detail/A_99-C-0099.html
I hope some of this is of some use to you.

Glori

: My 6 year old daughter has congential ichthyosis. She
: has recently been diagonis with trichothiodystrophy, these two disorders are related. Does anyone else out
: there has both of these disorders? I cannot find much
: information on trichothiodystrophy.
: Please mail any information or tips on this, Thanks!

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Comments:
: It happens that though I know little about this disease, I have stumbled across some information for it before.
: http://www.keratin.com/ag/ag013.shtml has a good definition and a few treatments mentioned for trichothiodystrophy.
: http://sites.netscape.net/isamelamad is a page created by a boy who dedicates it to his three brothers who all died from the disease.  He is trying to collect information and seems to genuinely want contact, and while the page is still under construction, you might want to get in touch with him.
: And lastly, the National Institute of Health is holding a clinical trial for people of any age and race who have trichothiodystrophy.  While you may not want your daughter to participate, they might send you some more information or have some on their web site.  The clinical trial is listed at:
: http://clinicalstudies.info.nih.gov/detail/A_99-C-0099.html
: I hope some of this is of some use to you.

: Glori

: : My 6 year old daughter has congential ichthyosis.  She
: : has recently been diagonis with trichothiodystrophy, these two disorders are related.  Does anyone else out
: : there has both of these disorders?  I cannot find much
: : information on trichothiodystrophy.
: : Please mail any information or tips on this, Thanks!



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