As soon as indications are noticed a female should be screened for Turner Syndrome. Only some infants will have obvious characteristics at birth (lymphedema, webbed neck, heart anomalies, etc.), and for many these characteristics may become evident as she grows or fails to grow, or if other symptoms develop. It is recommended by the American Medical Association that girls below the 5th percentile in height be screened, especially when combined with some of the physical features listed in the common indications check list.
Babies are not routinely screened for Turner Syndrome at birth, and many infants do not have identifying characteristics; therefore, more than 50% of babies with TS are identified later in life.
uring pregnancy, Turner syndrome may be diagnosed by chorionic villi sampling (CVS) or after 13 weeks gestation, amniocentesis or even a sonogram requiring further evaluation. Sometimes, fetuses with Turner Syndrome are identified by abnormal ultrasound findings (i.e. heart defect, kidney abnormality, cystic hygroma, ascites). After birth she can have a simple blood test called a karyotype, which is the gold standard for testing. This test requires a blood draw and usually will require a two week waiting period for results. This test will check for the absence of all or part of one X chromosome.
Screening for Turner Syndrome should not be delayed, as there are other important health screenings of organ and lipid function, and interventions that could benefit a young child that would not have the same effect in an older child. If a child exhibits common traits indicated, she should be screened without delay to rule out this potential syndrome
The best source of information is a pediatric endocrinologist who specializes in the care of patients with Turner Syndrome. Do your own investigative research and read everything you can. Familiarize yourself with the Clinical Guidelines, join parent groups and attend workshops or webinars whenever possible. Information for an infant is quite different and will evolve over various stages of life. It will be important to be vigilant about ongoing self-advocacy, education, support services and care.
Your primary care doctor may refer you to an endocrinologist when there is suspicion or a known problem with your endocrine system. Endocrinologists are trained to diagnose and treat hormone imbalances and problems by helping to restore the normal balance of hormones in your system. They take care of many conditions including:
Diabetes
Thyroid diseases
Metabolic disorders
Over or under production of hormones
Pubertal development and menopause
Osteoporosis
Hypertension
Lipid disorders, ie. cholesterol
Infertility
Short Stature
Endocrinologists also conduct basic research to learn the way glands work, and clinical research to learn the best methods to treat patients with a hormone imbalance. Since Turner syndrome is a complex condition affecting each person uniquely, patients may be seen by any number of specialists; including, cardiology, nephrology, dermatology, gastroenterology, orthodontic, orthopedic, ENT, opthomology, psychiatry, and so on.
Genetic testing may be performed prenatally or sometime after birth. Ideally, a person who undergoes a genetic test will discuss the meaning of the test and its results with a genetic counselor.
Finding specialized care for Turner Syndrome can be challenging, and we are dedicated to expanding this network of support.
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2023thu08jun8:00 pmAdvocacy Working GroupSign up to network and advocate for TS8:00 pm EDT
Join the Advocacy Working Group! Communicating with national lawmakers is one of the most effective ways to raise awareness and influence widespread change. We are accepting applications for this working
Join the Advocacy Working Group! Communicating with national lawmakers is one of the most effective ways to raise awareness and influence widespread change. We are accepting applications for this working group. Sign up below.
The advocacy working group meets on Thursday evenings 8PM EDT.
Note: There will be no meeting on November 3, 2022.
(Thursday) 8:00 pm
2023thu15jun8:00 pmAdvocacy Working GroupSign up to network and advocate for TS8:00 pm EDT
Join the Advocacy Working Group! Communicating with national lawmakers is one of the most effective ways to raise awareness and influence widespread change. We are accepting applications for this working
Join the Advocacy Working Group! Communicating with national lawmakers is one of the most effective ways to raise awareness and influence widespread change. We are accepting applications for this working group. Sign up below.
The advocacy working group meets on Thursday evenings 8PM EDT.
Note: There will be no meeting on November 3, 2022.
(Thursday) 8:00 pm
2023thu22jun8:00 pmAdvocacy Working GroupSign up to network and advocate for TS8:00 pm EDT
Join the Advocacy Working Group! Communicating with national lawmakers is one of the most effective ways to raise awareness and influence widespread change. We are accepting applications for this working
Join the Advocacy Working Group! Communicating with national lawmakers is one of the most effective ways to raise awareness and influence widespread change. We are accepting applications for this working group. Sign up below.
The advocacy working group meets on Thursday evenings 8PM EDT.
Note: There will be no meeting on November 3, 2022.
(Thursday) 8:00 pm
This is the meeting of a working group and is limited to medical professionals. The quarterly meeting will be presented by the Turner Syndrome Foundation and moderated by Kayla Ganger,
more
This is the meeting of a working group and is limited to medical professionals. The quarterly meeting will be presented by the Turner Syndrome Foundation and moderated by Kayla Ganger, BS, MHS, PA-C and Mary Gwyn Roper, MD, both active volunteers, leaders and professional members of the Foundation. The objective of this event is to assemble TS women in medicine with a diverse range of specialties to learn more about the mission and contribute to the discussion about solutions on issues facing patients today.
This working group will learn about:
In this discussion, you will:
WE Learn is a Turner Syndrome Foundation educational learning activity.
Every TS WOMAN IN MEDICINE is encouraged to be a professional member and an active contributor to this working group.
(Tuesday) 8:00 pm - 9:30 pm EDT
Online
2023thu29jun8:00 pmAdvocacy Working GroupSign up to network and advocate for TS8:00 pm EDT
Join the Advocacy Working Group! Communicating with national lawmakers is one of the most effective ways to raise awareness and influence widespread change. We are accepting applications for this working
Join the Advocacy Working Group! Communicating with national lawmakers is one of the most effective ways to raise awareness and influence widespread change. We are accepting applications for this working group. Sign up below.
The advocacy working group meets on Thursday evenings 8PM EDT.
Note: There will be no meeting on November 3, 2022.
(Thursday) 8:00 pm
Theme: Organization by Organic Themes.
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