AJR176

A Joint Resolution designating February of each year as “Turner Syndrome Awareness Month” in New Jersey.

Whereas, Turner syndrome (TS) is a rare chromosomal disorder that affects 1 in 2,500 girls and women throughout the world; and

Whereas, The condition is named for Henry Turner who, in 1938, was one of the first doctors to report on the syndrome in the medical literature. TS is identified by a difference in the genetic makeup of those who are affected; and

Whereas, Most girls and women have two complete X chromosomes (the sex chromosomes for females). Turner syndrome is caused by the absence of all or part of the second X chromosomes in some or all of the cells in the body; and

Whereas, Most fetuses with TS die before birth, and thirty percent of the infants born with TS are not diagnosed until they reach their teens; and

Whereas, TS is a highly variable disorder and its effects can differ dramatically from one person to another. Girls and women with TS develop a wide variety of symptoms affecting different organ systems; and

Whereas, Symptoms include short stature, premature ovarian failure, infertility, ear, eyes, heart, and kidney abnormalities, skeletal malformations, and learning disabilities; and

Whereas, A diagnosis of TS is often confirmed before birth and is based on chromosomal analysis performed subsequent to amniocentesis, where a sample of fluid surrounding a fetus is removed and analyzed, or chorionic villus sampling, which involves the removal of tissue samples from a portion of the placenta; and

Whereas, In some cases, certain physical findings associated with TS may be seen on a fetal ultrasound or other specific imaging techniques such as magnetic resonance imaging or echocardiograms; and

Whereas, The treatment of TS is directed towards the specific symptoms of each patient and requires the coordinated efforts of a team of specialists; and

Whereas, Pediatricians, pediatric specialists, surgeons, cardiologists, endocrinologists, speech pathologists, psychologists, and other health care professionals collaborate to systemically and comprehensively plan for a patient’s treatment; and

Whereas, Therapeutic procedures for TS may vary depending upon patient-specific factors, including disease severity; the presence or absence of symptoms; and the patient’s age and general health; and

Whereas, These procedures include: growth hormone therapy to normalize a girl’s height; hormone replacement therapy to stimulate normal development associated with puberty; thyroid hormone replacement therapy to treat patients with thyroid disease; and in vitro fertilization for those women suffering from infertility; and

Whereas, Early intervention and supportive services, including genetic counseling, psychosocial supports, and speech therapy are also important to ensure that children with TS reach their full potential; and

Whereas, While there is no cure for TS, early intervention, specific therapeutic procedures, and supportive services benefit those suffering from the syndrome; and

Whereas, Designating February of each year as “Turner Syndrome Awareness Month” in the State of New Jersey will raise public awareness of the disorder and promote the available medical treatment and supportive services that may allow girls and women with TS to lead full and productive lives; now, therefore,

Be It Resolved by the Senate and General Assembly of the State of New Jersey:

1. February of each year is designated as “Turner Syndrome Awareness Month” in the State of New Jersey in order to raise public awareness of the disorder and promote the available medical treatment and supportive services that may allow girls and women with the syndrome to lead full and productive lives.

2. The Governor is requested to annually issue a proclamation recognizing February of each year as “Turner Syndrome Awareness Month” in New Jersey, calling upon public officials and the residents of the State to observe the month with appropriate activities and programs.

3. This joint resolution shall take effect immediately.

STATEMENT

This joint resolution designates February of each year as “Turner Syndrome Awareness Month” in New Jersey in order to raise public awareness of the disorder and promote the available medical treatment and supportive services that may allow girls and women with the syndrome to lead full and productive lives.