Turner Syndrome Clinic

Overview

The Turner syndrome clinic provides compassionate care with a multidisciplinary approach. We are a subspecialty program, which means that we do not serve as primary care, but instead we provide each patient with a comprehensive evaluation, specific to the needs of people with Turner syndrome. In turn, our doctors work with the patient’s primary care provider to identify specialty needs, to coordinate care, and to improve outcomes. Our clinic was inspired by a wish to help those with Turner syndrome obtain resources important to their well being at a single institution.

We listened to our patients and their families who felt a clinic model was essential to optimal care. Additionally, we think of our clinic as a wellness center to emphasize that people with Turner syndrome are generally healthy but have ongoing medical needs. We welcome, in particular, patients who have not found a “Turner syndrome medical home” and we provide care across the lifespan.

Our Turner Syndrome Clinic is proud to be recognized by the Turner Syndrome Global Alliance (TSGA) as a Level 4 Regional Resource Center. Only nine centers in the nation have been designated as Level 4, the highest Level of Care designation which is based on the KidNECT Care Model which encourages family networking, education, comprehensive coordinated care and transition support as well as leadership in Turner Syndrome research. Dr. Lin was a member of the TSGA Working Group that created these guidelines.

Multidisciplinary Team

With joint leadership between Medical Genetics and Pediatric Endocrinology, we have assembled a multidisciplinary team of medical, surgical, and mental health specialists.

Our Services

• Medical genetics, genetic counseling
• Pediatric endocrinology
• Reproductive endocrinology
• Pediatric cardiology, adult Congenital Heart Disease (CHD) cardiology
• Otolaryngology (pediatric and adult), pediatric audiology
• Gastroenterology (pediatric and adult)
• Neuropsychology (pediatric and adult)
• General pediatrics, adolescent medicine
• Orthopaedics (pediatric and adult)
• Oral maxillofacial surgery and dentistry
• Social work
• Family advocate (parents of children with Turner syndrome)

About the Clinic

In order to provide up-to-date care for people with Turner syndrome, we follow the 2017 Clinical Practice Guidelines established by Claus Gravholt, MD, PhD, and collaborators (including clinic co-director Angela Lin, MD). Additionally, we help our patients and families appreciate the value of a care plan so that they may effectively coordinate with various healthcare providers as they grow older. Our patients are able to develop an ongoing relationship through periodic visits to our clinic. Dr. Lin (Genetics) and either Dr. Levitsky (Pediatric Endocrinology) or Dr. Hayes (Reproductive Endocrinology) serve as the first points of contact. Referrals are then made to other providers. In some instances, we can schedule a few additional appointments on the same day, but generally, we need the first visit to get acquainted.

Age-Appropriate Care

We work as a team to help those with Turner syndrome and their families transition from prenatal consultation to infancy to adolescence, and through adulthood and their senior years. Our approach is customized to the age of the patient and their specific needs.

Infants through Childhood, Birth – age 13

In the pediatric years, the emphasis is on initiating growth hormone as needed, identifying defects (such as congenital heart disease), and on hormone replacement therapy.

Adolescents and Young Adults, Age 14-22

The focus of care shifts from growth and baseline testing to the transition to independence. This differs for every patient, and thus care will be individualized to meet the specific needs of the patient.

Adults

We particularly welcome adult patients, who we may meet in a variety of ways. Some adult patients in our clinic are referred because of infertility evaluations, whereas others may have known for a longer period about their Turner syndrome diagnosis and wish to seek counseling on pregnancy and parenthood. In addition to fertility-related care, we provide multispecialty, coordinated care, even throughout the most senior years.

Appointments

With joint leadership between Medical Genetics and both Pediatric and Reproductive Endocrinology, we have assembled a multidisciplinary team of medical, surgical, and mental health specialists, including:

• Genetics
• Endocrinology
• Specialty as needed

For more information or to request an appointment, please call 617-726-1561.

Patient Resources

View the full collection of patient resources from the Turner Syndrome Clinic at MGfC and Mass General.

Research

Research provides physicians and the Turner syndrome community a better understanding of various aspects of TS. We value the opportunity to do research in our pursuit of better care options for people with Turner syndrome.

Research Activities from Our Co-Directors

• Angela Lin, MD, Medical Genetics
• Lynne Levitsky, MD, Pediatric Endocrinology
• Frances Hayes, MD, Reproductive Endocrinology

Recent Publications

Our Practitioners

On the day of your clinic visit, you will meet with several providers. You will also receive our photo directory to keep track of the many faces of our clinic.