Communication is the cornerstone of effective care for Turner Syndrome patients and their caregivers. The Turner Syndrome Foundation has developed this site to assist allied health professionals with complex medical concepts.
“In medicine we cannot always cure, but we can always care.”- Frances Salerno, MD
Each diagnosis has an individual story and outcome… It is estimated that one in 50-100 girls with short stature have Turner Syndrome. Thus, experts in the field recommend short girls less than the 5th percentile in growth are tested for this condition. A majority of girls are not diagnosed until after 10 years of age. Furthermore, Turner Syndrome is not typically identified until after 7 years after short stature has been clinically evident. As such, final height will be compromised by late interventions with adjunctive growth hormone therapy. Increasing evidence suggests that height outcomes can be markedly enhanced with early recognition of Turner Syndrome. Additionally, estrogen and progestin therapy is also delayed, resulting in delayed onset of pubertal development. Consequences of a missed or delayed diagnosis profoundly affect a girls growth, sexual maturation, and self-esteem. The earlier the diagnosis the better the long term health outcome.
With over 80,000 girls and women living with Turner Syndrome at any one time in the U.S., there are individuals in need of specialized services for every aspect of the life cycle. Join the growing list of providers who specialize in maternal-fetal, pediatric, and adult care. Take a moment to complete the provider registration to introduce yourself, your interest, and affiliations. As a registered provider you will be seen as a partner in caring and be invited to increase visibility in the management of TS.