Trisomy X Information


I found that when I looked for scientifically valid information on Trisomy X, it was really hard to find.  There was a lot of information, but most of it was based on invalid or incomplete studies.  For example, there is a study often referred to as the "Denver Study".  This was based on a small sample selected from girls that had already shown issues.  Below you will find links to the studies and other information I found to be most helpful.




Studies:


Unique Trisomy X Syndrome Brochure and Data

http://www.rarechromo.org/information/Chromosome_X/Triple_X_syndrome%20Trisomy_X%20FTNW.pdf

Great information pamphlet with data about girls with Trisomy X at different ages:

 

Dr. Tartaglia's Overview of Trisomy X

https://drive.google.com/file/d/0B_-AIQRirmrEbl94aVVIcHBJZjg/view?usp=sharing

Medical Review of Trisomy X by one of the few experts on this syndrome.

 
 


Information:


AXYS Trisomy X Information Brochure
https://genetic.org/wp-content/uploads/2018/08/AXYS-47XXX-Brochure-8-18.pdf
Parent's brochure for newly diagnosed families


Great Article for Explaining Trisomy X 

https://genetic.org/wp-content/uploads/2016/08/My-Guide-to-Trisomy-X.pdf


AXYS Trisomy X Panel Info

https://genetic.org/wp-content/uploads/2017/07/Rebecca-Wilson_Trisomy_X_AXYS-2017.pdf
 
Dutch Contract Group Brochure
http://www.triple-x-syndroom.nl/menu150/information+leaflet+in+english
An excellent resource with easy to read information and pictures for parents and caregivers of girls with Trisomy X.

Elizabeth and her Extra X 
https://www.createspace.com/4717630 
A great book to help tell your daughter about Trisomy X

Mayo Clinic

https://www.mayoclinic.org/diseases-conditions/triple-x-syndrome/symptoms-causes/syc-20350977?fbclid=IwAR1V24yMaPwAiai_u5XTiS_IL-ZWlfcKiiQ8b4ud4OHlbJv16WsmsszNXOk

Trisomy X Summary and Description from the Mayo Clinic

Genetics Home Reference: Triple X Syndrome

http://ghr.nlm.nih.gov/condition/triple-x-syndrome

Excellent reference given out by genetics department

Special Needs Parenting 
http://magazine.parentingspecialneeds.org/publication/?i=243011

Story from a mom and daughter's perspective about Trisomy X.  January / February: Pages 13-17