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AXYS - The Association for X&Y Chromosome Variations

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Helpline: 1‑267‑338‑4262 | info@genetic.org

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Dear Abby, Dear Abby..

AXYS was founded on the response to a letter to Ann Landers sent by our founder, Melissa Aylstock.  David Drexler, a long-time volunteer with AXYS and member of our communications committee, has written a beautiful, compelling letter to Dear Abby.  Please write to Dear Abby and share your letter with us.

David’s letter:

Dear Abby,

I’m writing you today to alert your readers to chromosome anomalies that affect one in five hundred people, male and female. Although they are the most common of the chromosome anomalies they are also seldom diagnosed, most often by amniocentesis or in a fertility workup.

Every cell of a normal body has 23 pairs of chromosomes and on those chromosomes are the genes that control who and what we are. The sex chromosomes (23rd pair) dictate sex. A normal male has XY chromosomes and a normal female has XX. For reasons we don’t know, in some cases there are more than two sex chromosomes with an extra X, called 47,XXY or just XXY. There can also be more than two Xs and more than one Y for example trisomy X or 47,XXX.

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2018-07-09T17:20:08-04:00Categories: All Variations|

Bone Density

We rarely use Wikipedia as a resource, but this overview on bone density is quite well done. As with any medical issue or question, please consult your physician. The Wikipedia entry is a general discussion of the topic. It is not specifically related to X and Y Chromosome Variations. For individuals who are 47,XXY, untreated hypogonadism can lead to osteoporosis and osteopenia. Most benefit from testosterone replacement therapy (TRT). Those who identify as intersex or choose not to use TRT should seek competent medical help for alternative methods to preserve bone density.

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2017-11-22T14:27:40-05:00Categories: 47,XXY (Klinefelter)|

Resource in Texas: Social Skills Classes for Children and Teens with Social Integration Differences

www.socialmotionskills.org/

From their website description:

We are 100% Social & Life Skills

  • We focus SOLELY on social skills training and learning of mainstream activities – for children and adolescents with social & learning deficits and autism spectrum disorders
  • We’re serious about social behavior modification. We offer the quantity and quality of practice sessions necessary to effectuate real change
  • We are your relentless persistence partner. Without a commitment to persistent practice, social skills will not be internalized
  • We are the only one. There is no other program like us in Houston or its surrounding areas.
2018-07-09T17:31:10-04:00Categories: All Variations|

Testosterone Deficiency

Article Title: Testosterone Deficiency

Author: E. Barry Gordon, MD

Date of Publication: 2006

Most people have heard of testosterone, but very few are aware of the diseases resulting from the hormone’s deficiency. This situation is not surprising. Testosterone is frequently in the news media either because of its energizing effect on our sexuality or, more commonly, because of its illegal overuse to enhance athletic performance. Because of this the hormone has taken on something of a sordid, sleazy, even illegal, aura.

The reason very few people are aware of the disease of testosterone deficiency is that no one talks about it. It’s been swept under the medical rug and kept there. Even most of the medical community know very little, if anything, about the scope and severity of this disease. Many don’t want to know about it. They are frightened by the myths and don’t want to be associated with the popular perceptions.

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2022-03-10T09:44:15-05:00Categories: 47,XXY (Klinefelter)|

Triple X syndrome: a review of the literature

Article Title: Triple X syndrome: a review of the literature

Authors: Otter, Schrander-Stumpel, and Curfs

Date of Publication: July 1, 2009

“Triple X syndrome is a syndrome with a high level of variety in the physical and behavioural phenotype. Triple X syndrome is not rare, but it is often undiagnosed. Notwithstanding the relatively high prevalence of triple X syndrome, there are many issues yet to be studied in physical and behavioural development up to old age.”

“Above all, further study is needed to establish evidence-based treatment and support protocols in physical treatments (endocrinological treatment, fertility issues and treatment in cases with EEG anomalies in relation to behaviour, etc.), educational support, psychiatric diagnosis and treatment, and psychological treatment, such as psychotherapy and family therapy.”

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2023-01-14T17:32:49-05:00Categories: 47,XXX (trisomy x)|Tags: |

AAP: Guideline Calls for Pre-K ADHD Evaluation

Article Title: AAP: Guideline Calls for Pre-K ADHD Evaluation

Author: Charles Bankhead

Date of Publication: October 16, 2011

Primary care physicians should begin evaluating children for attention deficit hyperactivity disorder (ADHD) at age 4 and continue through age 18, according to a new clinical guideline from the American Academy of Pediatrics.

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(You may need to setup a free MedPage Today account to view this article.)

2022-02-25T17:04:44-05:00Categories: All Variations|Tags: |

Understanding and Modifying the Behavior of Children with X and Y Chromosome Variations: A Guide for Parents and Professionals

Article Title: Understanding and Modifying the Behavior of Boys with XXYY: A Guide for Parents and Professionals

Author: Karen Riley, PhD

Date of Publication: 2007

This paper was originally commissioned by the XXYY Project.  At the urging of Dr. Riley, the XXYY Project has generously shared their valuable “Behavior Paper” with AXYS.

While this paper focuses on the behavioral profile of XXYY, it will prove very valuable for any child who is experiencing behavior issues.  This paper provides step-by-step instructions for coping with behavioral issues that many children with X and Y chromosome variations may experience to one degree or another.

We urge you to review this document and generally substitute your child’s condition for XXYY.  In most cases, the fit is very good.

Once again, we offer our sincere thanks to the XXYY Project for sharing this important work with the AXYS community.

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2018-07-14T10:45:59-04:00Categories: All Variations|
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