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X-Linked Ichthyosis

What is X-Linked Ichthyosis?

X-Linked Ichthyosis is a rare skin disorder caused by the hereditary deficiency of the steroid sulfatase (STS) enzyme.

 

X-Linked Ichthyosis is a rare skin disorder caused by the hereditary deficiency of the steroid sulfatase (STS) enzyme.
Acknowledgement of X-Linked Ichthyosis has not been added yet.
16.6http://www.orpha.net
Synonyms for X-Linked Ichthyosis has not been added yet.
Cause of X-Linked Ichthyosis has not been added yet.
Symptoms for X-Linked Ichthyosis has not been added yet.
Diagnosis of X-Linked Ichthyosis has not been added yet.
Diagnostic tests of X-Linked Ichthyosis has not been added yet
Treatments of X-Linked Ichthyosis has not been added yet.
Prognosis of X-Linked Ichthyosis has not been added yet.
Tips or Suggestions of X-Linked Ichthyosis has not been added yet.
References of X-Linked Ichthyosis has not been added yet.
X-Linked Ichthyosis Created by kdega1
Last updated 18 Dec 2013, 08:29 PM

Posted by kdega1
18 Dec 2013, 08:29 PM

If you can get creams with lactic acid it helps clear it up. Keep moisturising to keep on top of the dryness. Salt baths can also help remove the scales.

Posted by themohal
16 Dec 2013, 05:36 AM

Can Someone please help me how to get control on it? please tell me cream names Oils.etc

Posted by themohal
15 Dec 2013, 08:38 AM

No cure for X-linked Ichthyosis

View Full Thread (2 more posts)
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CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.

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After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.

Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.

Visit sanfordresearch.org/CoRDS to enroll.

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A mother of a 3.5 year old boy who has been diagonised with a 12q12 deletion. He has hypotonia, GDD, PDDNOS.He walked at 28 months and can now put two words together.

 

Deletion is genetic.

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My son has been diagnosed with xxxy syndrome and hidrotic ectodermal dysplasia and Ichthyosis.. not sure which degree of ichthyosis he has..

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X-Linked Ichthyosis

Created by kdega1 | Last updated 18 Dec 2013, 08:29 PM


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