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#278 - 02/16/01 12:33 AM this board has been amazing
justme Offline
Junior Member

Registered: 02/15/01
Posts: 1
HI-
I am a teacher at a school in florida..i work with students who are learning english in small groups..one of my new students has what the front office said was a genetic skin disease..the child speaks no english, yet..he is very eager to learn! THe family is new to this country, so there was no information in his folder. But I had to find out what was wrong with the child. So searching through the net, i stumbled upon a disease I neever knew existed.
Your board and FIRST website haas opened my eyes to the difficulty this syndrome causes in people's lives. We are always judged by people based on looks and first impressions..unfortunately. Children can be very cruel. I heard the family of my student has very little money and the treatment for his very severe condition is expensive..$500/mo to upkeep. I want to find out more about best treatments, etc,,
I have also noticed that there is a very distinct strong odor..is this a result of the skin condition, or something else? i wish all of you the best..thanks for listening,k

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#279 - 02/20/01 04:48 PM Re: this board has been amazing
Laura Phillips Offline


Member

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

Glad you found us! I'm guessing, being in Florida, that your student's primary language might be Spanish? There are a couple of people that post on this board who speak Spanish as their primary language. Also, many of FIRST's publications are available in Spanish. If you contact FIRST's office at 215-631-1411, they can give you more information and get something mailed out to you.

As far as odor, it depends partly on what type of ichthyosis this boy has. Some forms of ichthyosis are associated with odor problems more than others (though almost all forms have at least a slight odor to them). The odor is frequently caused by infection (an easy secondary problem with so much cracking, dry skin). Bathing with a little bleach in the bathwater is sometimes all that's needed...but if it's truly an infection, oral antibiotics may be necessary to really control the infection (and hence the odor). Again, FIRST has some great material that describe how to deal with this.

Please let us know if we can help provide you with any other information, or if you have any other questions about ichthyosis.

Regards,
Laura

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