Picture of butterfly

Turner Syndrome Clinic

Welcome to the Turner Syndrome (TS) Clinic at MassGeneral Hospital. Our clinic provides a medical home for people of all ages with Turner syndrome.

To schedule an appointment, please call: 617-726-1561

Email the 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.

Multidisciplinary Team

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

Co-Directors

Dr. Angela E. Lin, MD, Medical Genetics
Dr. Lynne L. Levitsky, MD, Pediatric Endocrinology
Dr. Frances J. Hayes, MD, Reproductive Endocrinology

Our Services

Meet the Team

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.

Co-Directors

Genetic Counseling

Adult CHD Program

Lymphedema

Pediatric Endocrine Program and Diabetes Center

Psychology Assessment Center (PAC)

Child Psychiatry

Dermatology

Fertility Center

Obstetrics & Gynecology

Other Clinical Services

About this Program

Photo of Turner Syndrome Clinicians

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.

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

Jones, K. et al (2018). Dual diagnoses in 152 patients with Turner syndrome: Knowledge of the second condition may lead to modification of treatment and/or surveillance. Am J Med Genet Part A. 2018: 1-11.

Levitsky, L. et al (2015) Turner syndrome: update on biology and management across the life span. Curr Opin Endocrinol Diabetes Obes. 22(1): 65-72.

Prakash, S. et al (2016). Autosomal and X Chromosome Structural Variants Are Associated with Congenital Heart Defects in Turner Syndrome: The NHLBI GenTAC Registry. Am J Med Genet A. 2016, 170(12): 3157-3164.

Proposal for a national registry to monitor women with Turner syndrome seeking assisted reproductive technology (Lin et al, 2016)

Gravholt, C. et al (2017). Clinical practice guidelines for the care of girls and women with Turner Syndrome. European Journal of Endocrinology, 177(3): G1-G70. – This article was based on the 2016 Cincinnati International Turner Syndrome Meeting. Dr. Angela Lin, a doctor at MGHfC, helped write these guidelines. The article is written in medical language, but your doctor would be happy to talk about it at your child’s clinic visit.

Our new research assistant, Emma Snyder, joined the team in August of 2018. In her role, she coordinates the advancement of our current research project on Turner syndrome mosaicism. She interacts with patients on the phone and in clinic to discuss the project, and to ensure informed consent is given by those who wish to participate in the study. She also maintains our research database, stays up to date on ethical research practices, and writes our periodic clinic newsletter. Emma is happy to be a part of the team and looks forward to learning from and with clinicians and patients.

Patient Resources

Photo of Emma Snyder and Briana Beckvold
Aided by MassGeneral Hospital for Children project manager/editor Briana Beckvold, MA, CHES (right), we’ve developed several patient education materials for our clinic. Briana manages all aspects of pediatric patient education, from plain language reviews to creating digital and print materials. She also publishes Totline, a bi-monthly e-newsletter that covers events, news and stories within the MGHfC community. Briana is a certified health education specialist with a master’s in health communication and a bachelor’s in journalism.

Turner syndrome is a genetic condition that affects only girls and women. It is caused by a missing or partial X chromosome. This condition may lead to different medical problems, including reduced height, late puberty, infertility and heart problems. Not every person has the same problems. Most people with Turner syndrome lead healthy lives with regular medical care and education.

 

About Turner Syndrome

Turner Syndrome: What You Need to Know

Turner Syndrome | Español |한국어

Turner Syndrome Mosaicism

Appointments and Your Care Team

Keeping in Touch With Your Doctor and Care Team

Preparing for Your First Appointment

In addition to our in-house education materials, we endorse the following groups and resources:

Organizations and Websites

Turner Syndrome Society of the United States (TSSUS)– The TSSUS website describes common medical problems associated with Turner syndrome. It also offers a directory of doctors familiar with Turner syndrome, FAQs reviewed by a group of experts, and the chance to connect with others touched by Turner syndrome.

Turner Syndrome Global Alliance (TSGA)— The Turner Syndrome Global Alliance seeks to “connect science, resources, and funding to the Turner Syndrome community.” They hope to educate the medical field on the importance of including Turner syndrome in genetics research pursuits.

Boston International Turner Syndrome Summit— An annual summit for individuals with Turner syndrome ages 12-19, meant to provide enriching experiences that foster independence and community.

U.S. National Library of Medicine: Turner Syndrome

National Human Genome Research Institute: Turner Syndrome

Transitions

Transition Self-Assessment (from the Endocrine Society)

 

Professional Development and Career Resources

Massachusetts Rehabilitation Commission (MRC)— The Massachusetts Rehabilitation Commission helps individuals with disabilities to live and work independently.

At your visit to the TS clinic, we are happy to provide additional referrals and resources related to career development and professional skills development.

 

 

Recommended Books

 

  • Turner – Know Your Body! An Information Book on Turner Syndrome (Editor, Claus, H. Gravholt, 2009) 
  • Standing Tall with Turner Syndrome (Claudette Beit-Aharon, 2013, available through lulu.com) – This collection of essays written by women with Turner syndrome was edited by the mother of a young woman who is one of the authors. Their insights are powerful, delightful and uniquely compiled.

News

  • Dr. Angela Lin presents at Turner Syndrome Society of the US - 10/28/2016, Mass General

    The Turner Syndrome Society of the US (TSSUS) hosted the annual family conference in Cincinnati, Ohio, July 22-24, 2016. The theme was approaching health care as a team. Dr. Angela Lin presented talks entitled, “Genetics 101: An Introduction”, and “Health Care Game Plan.”

  • Rosie's Story: Multidisciplinary Care Through Life's Stages - 7/15/2015, Mass General

    Rosie Mahoney has Turner syndrome, but doesn't let it stop her from dreaming big. With help from the Turner Syndrome Clinic at MassGeneral Hospital for Children, Rosie develops the skills she needs to achieve her dreams.

  • Women with Turner Syndrome Tell Their Stories - 4/7/2014, Mass General

    Boston Globe article profiles Miriam Beit-Aharon, a patient in the MGH Turner Syndrome Clinic, whose mother, Claudette, edited a collection of essays of women living with Turner syndrome. The article mentions Co-Director Dr. Angela Lin, and her interest in the use of IVF for women with Turner syndrome.

  • Turner Syndrome Clinic Offers a Lifetime of Coordinated Multispecialty Care - 12/1/2013, Mass General

    Opened in October of 2011 under the leadership of medical geneticist Angela Lin, MD, and Lynne L. Levitsky, MD, chief of pediatric endocrinology at MassGeneral Hospital for Children (MGHfC) and joined by reproductive endocrinologist Frances Hayes, MD, in 2013, the Turner Syndrome Clinic at MGHfC provides comprehensive evaluation and individualized care for newborns, toddlers and adolescents with Turner syndrome.

Contact

Contact Us

Turner Syndrome Clinic

Yawkey Center for Outpatient Care

32 Fruit StreetSuite 6C Boston, MA 02114
  • Near Public Transit
  • Accessible
  • Phone: 617-726-1561
  • Fax: 617-726-1566

To schedule an initial evaluation (your first appointment with our clinic), please contact our Patient Services Coordinator at 617-726-1561.

If you have already been seen in our clinic and would like to schedule a follow-up specialty appointment (for example, endocrinology, cardiology, etc.), or would like to schedule one on the same day, our patient services coordinator will assist you in contacting them. Understandably, different specialty clinics may meet on different days.

Physicians may call 888-644-3211 or use the online referral form and the Access & New Appointment Center will call your patient within 1 business day.

Please see visitor information for driving directions, a map of the hospital, hotels (PDF), dining options and more.

To schedule an appointment, please call: 617-726-1561

Email the clinic

Back to Top