Our Programs
The Turner Syndrome Society of the United States creates awareness, promotes research,
and provides support for all persons touched by TS.
How We Started
The Turner Syndrome Society was created in 1987 by a group of women in Minnesota for the purpose of networking and support. Today, we have over 600 members and over 100 volunteers to support and maintain our valuable programs.
Who We Are
We are recognized as national non-profit 501 (c) (3) EIN# 41-1596910 organization providing health-related resources to patients, families, and physicians for the diagnosis and treatment of Turner syndrome. There are chapters and resource groups located throughout the country. The TSSUS is operated by 3 staff members at our National Office in Houston, TX, 2 consultants, and is overseen by 11 nationwide board members.
What We Do
The Turner Syndrome Society serves the TS community by promoting research, creating awareness of TS, and providing support to patients and family members. Staff members answer questions via phone and e-mail, work with local groups, create resources, plan events, and keep our website up to date and relevant to the needs of our unique community.
Each summer, TSSUS holds an annual conference with speakers from a variety of professions. Some of these include medical experts, social workers, educators, and psychologists. These meetings provide an opportunity to exchange information on many topics of interest to TS patients of all ages.
The members of our society have offered a wealth of support and we understand that every person’s needs are unique and that Turner syndrome affects each girl and woman in a different way. Education is our foremost goal, so whether you are a member of our society or a guest, you can access the latest Turner Syndrome Clinical Guidelines, attend our National Conference, get support from parents and women with TS that “have been where you are,” attend local chapter and support group events, as well as access our many other resources.
Membership to TSSUS not only allows us to continue to offer valuable services to all those touched by TS, but also gives individuals, families, and professionals access to more resources.
DID YOU KNOW?
About TSSUS
About Turner Syndrome
What Is Turner Syndrome?
Turner Syndrome (TS) is a condition that affects only girls and women. It is identified by a difference in the genetic make-up of those who are affected. 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 chromosome in some or all of the cells of the body. The most consistent features of TS are short stature and lack of ovarian development. A synthetic form of human growth hormone (GH) is available for medical use. GH is sometimes given to girls with TS to help them grow. GH therapy may be used as treatment in cases of growth hormone deficiency, or short stature. At the typical age of puberty, girls with Turner Syndrome are usually prescribed hormone replacement therapy to induce normal female developmental changes. This therapy is often continued through most of the adult years.
A Typical Human Karyotype
A Turner Syndrome Karyotype (45X)
Diagnosing Turner Syndrome
Girls and women are diagnosed at various stages of life, from the prenatal stage to adulthood. The age of diagnosis has been decreasing with better awareness of TS in the medical community.
Usually, there is something ‘different’ about the girl or woman that makes the parent or the doctor investigate the possibility of TS.
The diagnosis of is made by a blood test which looks at the complete set of chromosomes of the individual. This is called a karyotype. Karyotype analysis shows if one of the X chromosome pair is missing from the full chromosome set, or if there are any structural differences in the X chromosomes.
Before birth, diagnosis of TS can be made by taking a sample of amniotic fluid or other fetal tissue to look at the fetal karyotype. Ultrasound is also used to screen for patterns often seen in TS, such as fluid buildup around the neck, and kidney or heart abnormalities.
After birth, diagnosis of TS is confirmed by taking a sample of blood or other tissue to obtain a karyotype. Because there is a range of health, developmental, social, and learning challenges which might affect girls and women with TS to different degrees, it is important to diagnose TS as early as possible.
Early diagnosis helps doctors determine whether the girl or woman has health issues that need treatment or need to be followed.
Girls and women are diagnosed at various stages of life, from the prenatal stage to adulthood.
There is a range of health, developmental, social, and learning challenges which might affect girls and women with TS to different degrees, so it is important to diagnose TS as early as possible.
TS is not a disease, but a genetic condition that is associated with a range of health concerns. TS is not directly “treated” by a doctor, but the individual health concerns that arise for each girl or woman with TS should be monitored and treated by the appropriate specialist.
Treating Turner Syndrome
TS is not a disease, but a genetic condition that is associated with a range of health concerns. TS is not directly “treated” by a doctor, but the individual health concerns that arise for each girl or woman with TS should be monitored and treated by the appropriate specialist.
For example, girls and women with the heart conditions common in TS should be followed by a cardiologist. New medical developments allow women with TS who are interested in starting a family to seek the help of an obstetrician who specializes in in-vitro fertilization.
A girl with TS may get growth hormone under a pediatric endocrinologist.
Some areas have coordinated TS clinics where patients see various specialists in the same day. These may be found at www.turnersyndrome.org.
