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AXYS wants you to stay connected to news regarding research, treatment, education and therapy for X and Y variations. We also want to alert you to upcoming support group meetings in your area, and to send you a periodic online newsletter. Please use the following link to provide us with your name and email address. The form will ask you which variations you want to hear about and your, or your child’s, year of birth. This will help us let you know about opportunities to participate in research that specify an age range. Please also provide us with your postal address so we can send you an informational brochure specific to the condition of concern to you, and which you can share with others. Once or twice a year we may also send you a fundraising letter because, after all, that’s how nonprofit organizations like AXYS survive and prosper!
By the way, you can be certain that your information is secure with us and we will never share it without your specific approval.
Please do not use an email address from Hotmail, MSN, or Outlook. These services tend to block emails from many organizations including AXYS. UPDATE (12/11/23): We are also experiencing problems with sbcglobal.net and bellsouth.net email addresses.
This is an article written by AXYS board member Ginnie Isaacs Cover, MSW, MBA for the July 2017 issue of Exceptional Parent magazine. It provides some general information on sex chromosome variations and highlights certain challenges parents can face in getting the appropriate care and assistance for their child.
“ACMG Releases Updated Position Statement on Noninvasive Prenatal Screening (NIPS) for Detection of Fetal Aneuploidy”—The American College of Medical Genetics and Genomics (ACMG), released a new position statement on July 28, 2016 that expands upon its 2013 recommendations on the use of NIPS in prenatal care. “ACMG continues to stress that NIPS is a screening rather than a diagnostic test and positive results should be followed by a diagnostic test such as chorionic villus sampling or amniocentesis,” wrote the paper’s lead author. Click Here.
Recommended Reading: Tips From Parents and Adults for the benefit of others
Note: These are unofficial recommendations from parents who have found these books, articles, websites and other resources helpful in some way. When possible, we will provide an Amazon.com link for ease of purchase, a link to the description of the book, and a link to a description of the author. Unless otherwise stated, AXYS is not involved in the sale, and we recommend that you shop around before making your purchase.
Date of Publication: May 2017
A couple in the U.K. are fighting to help their son with 47,XYY get what he needs to be successful in school. From the original article:
“Holly Mayatt, of Sandown Road, said her son Harry, who attends All Saints Junior Academy, is struggling more and more at school due to him not being given specialist provision which she has asked for.
Harry has XYY syndrome, a rare chromosomal disorder. Symptoms may include learning disabilities and behavioural problems such as impulsivity. He also has SPD (sensory processing disorder).”
Article Title: Unique – XYY
Authors: Unique – Rare Chromosome Disorder Support Group
Date of Publication: 2014
An article with general information about XYY Syndrome.
An excerpt:
“Approximately one boy in 1000 has XYY chromosomes. In the cells of their body, instead of 46 chromosomes including one X and one Y chromosome, they have one X and two Y chromosomes, making 47 in all. The impact of the extra Y chromosome is extremely variable.”
Article Title: XYY Study Day Report
Author: Unique – Rare Chromosome Disorder Support Group
Date of Publication: 2008
“Families with a son with XYY – a single extra Y chromosome – met experts and researchers at a study day in Oxford, UK in April 2008. They heard what is already known from research conducted on boys and men with XYY who were identified in the 1960s and what is starting to emerge from a follow-up study of the development of children with an extra sex chromosome, launched last summer in the UK. This study will refine and update knowledge about boys and girls aged between 4 and 16 with Triple X, XYY and XXY (Klinefelter syndrome), and in particular what is known about their behaviour and learning.”
Authors: Jean-Francois Lepage, David S. Hong, Mira Raman, Matthew Marzelli, David P.
Roeltgen, Song Lai, Judith Ross, and Allan L. Reiss.
Date of Publication: February 2014
From the abstract:
“The neurocognitive and behavioral profile of individuals with 47,XYY is increasingly
documented; however, very little is known about the effect of a supernumerary Y-chromosome on
brain development. Establishing the neural phenotype associated with 47,XYY may prove
valuable in clarifying the role of Y-chromosome gene dosage effects, a potential factor in several
neuropsychiatric disorders that show a prevalence bias towards males, including autism spectrum
disorders. Here, we investigated brain structure in 10 young boys with 47,XYY and 10 agematched
healthy controls by combining voxel-based morphometry (VBM) and surface-based
morphometry (SBM). VBM results show the existence of altered grey matter volume in the insular
and parietal regions of 47,XYY relative to controls, changes that were paralleled by extensive
modifications in white matter bilaterally in the frontal and superior parietal lobes. SBM analyses
corroborated these findings and revealed the presence of abnormal surface area and cortical
thinning in regions with abnormal grey matter and white matter volumes. Overall, these
preliminary results demonstrate a significant impact of a supernumerary Y-chromosome on brain
development, provide a neural basis for the motor, speech, and behavior regulation difficulties
associated with 47,XYY, and may relate to sexual dimorphism in these areas.”
Article Title: Sex chromosomes and the brain: a study of neuroanatomy in XYY syndrome
Authors: Daniel M. Bryant, Fumiko Hoeft, Song Lai, John Lackey, David Roeltgen, Judith Ross, and Allan L. Reiss
Date of Publication: December 2012
“The results suggest that genetic variations associated with XYY syndrome result in increased brain matter volumes, a finding putatively related to the increased frequency of ASDs in individuals with this condition. In addition, frontotemporal grey and white matter reductions in XYY syndrome provide a likely neuroanatomical correlate for observed language impairments.”
