Turner Syndrome, or TS, is a common genetic disorder that affects 1 in 2,000 females, and is associated with a wide array of possible manifestations including short stature, gonadal failure and cardiovascular disease.
The goal of the University of Florida’s Turner Syndrome Center of Excellence is to provide state of the art, comprehensive care to girls and women by employing a multidisciplinary approach and consolidated care addressing its major manifestations. Our team is comprised of an endocrinologist with specialized interest in TS, a cardiologist with expertise in cardiac imaging, as well as psychology and nutrition services. In addition, our program provides networking opportunities for patients and families through social events and informational sessions.
About Us
The University of Florida’s Turner Syndrome Center of Excellence is one of the only centers in the southeastern U.S. that provides specialized care to girls and women with TS. We care for infants, children, adolescents and young adults, and are capable of addressing many of the manifestations in a single clinic visit using a team-based approach.
Our faculty delivers state of the art care in the endocrine aspects and long term follow up of patients with TS. Additionally, our team has expertise in the cardiovascular aspects of TS, as well as cardiac imaging which is a critical component of care.
Our clinic is held regularly in Gainesville, FL. We welcome local patients, as well as those from throughout the country and the world.
Patient Care
We employ a multidisciplinary approach allowing us to address many of the manifestations of TS during clinic visits:
Pediatric Endocrinology
Treatment of short stature
Management of gonadal failure
Screening and treatment of autoimmune disorders such as chronic lymphocytic thyroiditis
Screening and management of insulin resistance, hyperlipidemia and metabolic syndrome
Coordination of screening for other aspects of TS
Pediatric Cardiology
Screening and treatment of structural heart defects
Evaluation and management of hypertension
Screening and management of aortic arch diseases such as coarctation of the aorta and aortic dilatation
Prevention of coronary artery disease
Psychology
Coping with feeling regarding diagnosis and fertility issues
Teaching techniques to deal with social interactions among peers
Counseling for anxiety and depression
Approach to educational obstacles
Nutrition
Prevention and treatment of obesity, insulin resistance, and hyperlipidemia
Research
Improving care in patients with Turner Syndrome is one of the missions of our center. Specifically, we are interested in reduction of cardiac risks in this population. Future research interests include:
- Establishing blood pressure goals to reduce cardiac risk and rate of aortic dissection
- Determining if treatment of nocturnal hypertension reduces cardiovascular risk in this population
- Evaluating whether intervention with beta blockers or angiotensin receptor blockers reduces rate of progression of aortic dilatation
- Correlation of nocturnal hypertension and aortic compliance in Turner’s Syndrome patients using computational flow dynamics and magnetic resonance imaging.
Resources
Turner Syndrome Society
The Turner Syndrome Society of the United States is a national non-profit organization that provides health-related resources to patients, families and physicians for the diagnosis and treatment of Turner syndrome. There are chapters and support groups located throughout the country. TSSUS holds an annual conference with speakers from a variety of professions including 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.
MAGIC Foundation Information on Turner Syndrome
The MAGIC Foundation is a national non-profit organization created to provide support services for the families of children afflicted with a wide variety of chronic and/or critical disorders, syndromes and diseases that affect a child’s growth. Since its inception the Foundation has grown to include support services for adults who were also impacted by these disorders.
NIH Information on Turner Syndrome
MedlinePlus is the National Institutes of Health’s Web site for patients and their families and friends. Produced by the National Library of Medicine, it brings you information about diseases, conditions, and wellness issues in language you can understand. MedlinePlus offers reliable, up-to-date health information, anytime, anywhere, for free. You can use MedlinePlus to learn about the latest treatments, look up information on a drug or supplement, find out the meanings of words, or view medical videos or illustrations. You can also get links to the latest medical research on your topic or find out about clinical trials on a disease or condition.
2007 Clinical Care Guidelines
The Journal of Clinical Endocrinology & Metabolism is the world’s leading peer-reviewed journal for endocrine clinical research and cutting edge clinical practice reviews. Each issue provides the latest in-depth coverage of new developments enhancing our understanding, diagnosis and treatment of endocrine and metabolic disorders. Regular features of special interest to endocrine consultants include clinical trials, clinical reviews, clinical practice guidelines, case seminars, and controversies in clinical endocrinology, as well as original reports of the most important advances in patient-oriented endocrine and metabolic research.
Clinical Trials in Turner Syndrome
ClinicalTrials.gov is a Web-based resource that provides patients, their family members, health care professionals, researchers, and the public with easy access to information on publicly and privately supported clinical studies on a wide range of diseases and conditions. The Web site is maintained by the National Library of Medicine (NLM) at the National Institutes of Health (NIH). Information on ClinicalTrials.gov is provided and updated by the sponsor or principal investigator of the clinical study. Studies are generally submitted to the Web site (that is, registered) when they begin, and the information on the site is updated throughout the study. In some cases, results of the study are submitted after the study ends. This Web site and database of clinical studies is commonly referred to as a “registry” and “results database.”