Turner Syndrome Clinic
Welcome to the Turner Syndrome Clinic at Mass General Hospital. Our clinic provides a medical home for people with Turner syndrome.
Meet the Team
- Angela E. Lin, MD
- Lynne L. Levitsky, MD
Chief, Pediatric Endocrinology
- Francis J. Hayes, MD
Dr. Angela Lin will be speaking at the upcoming 2014 Turner Syndrome Conference for families in Jacksonville, Florida, as well as the Turner Syndrome Research Symposium.
The Turner Syndrome Clinic provides compassionate care with a multidisciplinary approach. We are a subspecialty program, which means that we do not offer routine primary care but instead we offer our patients a comprehensive evaluation, specific to the needs of people with Turner syndrome. Our doctors work with patients’ primary care providers to identify specialty needs and to coordinate care and 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 call our clinic a wellness center to emphasize that people with Turner syndrome are generally healthy but with ongoing medical needs. We welcome, in particular, the older patient who has not found a “Turner syndrome medical home” and offer a wide range of providers.
With joint leadership between Medical Genetics and Pediatric Endocrinology, we have assembled a multidisciplinary team of medical, surgical, neuropsychological and social work specialists.
Co-Directors: Dr. Angela E. Lin, MD, Medical Genetics, Dr. Lynne L. Levitsky, MD, Pediatric Endocrinology, Dr. Frances J. Hayes, MD, Reproductive Endocrinology
- Medical Genetics, Genetic Counseling
- Reproductive Endocrinology
- Cardiology, Angiology (lymphedema)
- Otolaryngology, Audiology
- General Pediatrics, Adolescent Medicine
- Social Services
- Family Advocate (parents of children with Turner syndrome)
Butterfly image above courtesy of Mary Ellen McDonough, RN
Specialists at the MassGeneral Turner Syndrome Clinic evaluate and treat patients with the following types of Turner syndrome:
- Ring X
- Mosaic forms (females only)
- Deletion Xp, deletion Xq
- Other chromosome variants
- Celiac disease
- Congenital Heart Defects
- Hashimoto’s thyroiditis
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. Read this handout to learn more about Turner syndrome and how to care for your child.
Organizations and websites
- The Turner Syndrome Support Group of Boston – The Turner Syndrome Support Group of Boston meets on a quarterly basis at the Boston Public Library.
- 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.
- U.S. National Library of Medicine: Turner Syndrome
- National Human Genome Research Institute: Turner Syndrome
Research Articles and opportunities
- Clinical Practice Guidelines for Turner Syndrome (Bondy et al., 2007) – This article was based on a National Institute of Child Health 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.
- Approach to the Patient with Turner Syndrome (Davenport, 2010) – This article is written by an expert endocrinologist who researches Turner syndrome. It is focused on younger patients.
- Turner Syndrome Genotype-Phenotype Study at the NICHD
- Genetic Causes of Bicuspid Aortic Valve in Turner Syndrome – This ongoing research project is designed to find out whether bicuspid aortic valve in some people with Turner syndrome can be linked to specific genes. The MGH Turner Syndrome clinic is one of several participating sites in a study which is being conducted by researchers at Brigham and Women’s and Massachusetts General Hospitals, comprising cardiologists and geneticists including Drs. Simon Body, Robert Levine, Eric Isselbacher, Christine Seidman and others. Dr. Angela Lin, Co-Director of the MGH Turner Syndrome Clinic, is a Co-Investigator on the study.
- Dr. David Hong and Dr. Allen Reiss from Stanford University have been studying the interaction of brain development, genetics, learning and behavior. Their study invites girls (3-10 years) with both 45,X and mosaic forms of Turner syndrome to participate in research that includes an examination, blood test and MRI of the brain.. Expenses for travel are paid for, and families will receive an honorarium. If you are interested, contact Lindsay Chromik at 1-888-411-2672 toll free. You are welcome to contact me for further discussion.
- To learn more about lymphedema (puffy feet and hands) in girls and women with Turner syndrome, a researcher from Baylor University is conducting a survey. Jana Rothbauer is a lymphatic specialist physical therapist who has an approved protocol to distribute this survey online. If you are interested, visit http://www.surveymonkey.com/s/TurnerSyndrome.
- Jessica King is a student in the Master’s in Genetic Counseling Program at the University of Maryland, Baltimore. She is recruiting individuals for a research project to learn how parents (or other caregivers) explain the fertility issue of Turner syndrome to their daughters. Participants would complete an online survey for parents (or caregivers) who have a daughter with Turner syndrome. Details of this study, and the link to the survey (which is active only until November 1st, 2014) can be found by on the website of the TSSUS (Turner Syndrome Support US). This study has been approved by the IRB of her institution (Protocol #: HP-00060216, Title: Barriers in Communication Regarding Infertility in Turner Syndrome).
- Turner – Know Your Body! An Information Book on Turner Syndrome (Editor, Claus, H. Gravholt, 2009) – A PDF version will be shared at your visit.
- Turner Syndrome: A Guide for Families (Rieser and Davenport, 2008) – A PDF version will be shared at your visit.
- 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.
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.
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.
A first step is taken at a national level to integrate the shared goals of those interested in Turner syndrome.
Turner Syndrome ClinicYawkey Center for Outpatient Care
32 Fruit Street
Boston, MA 02114
Public Transportation Access: yes
Disabled Access: yes
To schedule an initial evaluation (your first appointment with our clinic), please contact the Patient Service Coordinator Sandy Massalski 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, Sandy 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.
Gifts from individuals help to support the hospital’s three-part mission of innovative research and education in addition to patient care that is second to none.
Contact MassGeneral Hospital for Children to schedule an appointment with one of our specialists.
Secure, convenient online access to your child's health information whenever you need it.