Picture of butterfly

Turner Syndrome Clinic

Welcome to the Turner Syndrome Clinic at Mass General Hospital. Our clinic provides a medical home for people 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 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.

Multidisciplinary Team

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

Our Services

    • Medical Genetics, Genetic Counseling
    • Endocrinology
  • Reproductive Endocrinology
  • Cardiology, Angiology (lymphedema)
  • Otolaryngology, Audiology
  • Gastroenterology
  • Neuropsychology
  • Psychiatry
  • General Pediatrics, Adolescent Medicine
  • Social Services
  • Family Advocate (parents of children with Turner syndrome)
  • Orthopaedics
  • Podiatry

Butterfly image above courtesy of Mary Ellen McDonough, RN

Meet the Team

On the day of your clinic visit, you will meet several providers. See our team directory (pdf) for a full list of specialists serving our patients.

Clinical Co-Directors:

About this Program

Photo of Turner Syndrome Clinicians

The Turner Syndrome Clinic provides compassionate care with a multidisciplinary approach. We are a subspecialty program, which means 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, coordinate care and improve outcomes. Our clinic was inspired by a wish to help those with Turner syndrome access resources important to their well-being at a single institution.

Age-Appropriate Care

The Turner Syndrome Clinic emphasizes that people with Turner syndrome are generally healthy but with ongoing medical needs throughout their lives. We work as a team to help those with Turner syndrome and their families transition from infancy to adolescence, and through adulthood and their senior years

  • Infants through Childhood
    Birth – age 13
  • Adolescents and Young Adult
    Age 14-22
  • Adults
    Especially women detected through an infertility evaluation and our most senior women (60+)

Appointments

With joint leadership between Medical Genetics and Pediatric Endocrinology, we have assembled a multidisciplinary team of medical, surgical, neuropsychological and social work specialists, including:

  • Genetics
  • Endocrinology
  • Specialty as needed

For more information or to request an appointment, please call (617) 643–3133.

Research

Research Activities Fall 2016: Publications, Presentations

Photo of Dr. Lea V. Travers and Erin McNamara
At the 2016 MGH Research Day, Dr. Lea V. Travers, a fellow in neuropsychology at the Psychology Assessment Center (PAC), presented her study of, “The Neuropsychological Profile of Girls and Women with Turner Syndrome Across the Lifespan”. Shown in the photo with Dr. Travers is Erin McNamara, BS, research assistant for the Turner Syndrome clinic. Co-authors included Amy Morgan, PhD and Mary (Molly) Colvin, PhD, as well as Dr. Lin, Clinic Co-Director. Related to this topic is research about the Social-Emotional Profile of these women, again, examining how characteristics change (or stay the same) over time. This material has been submitted to another meeting.

Articles

Lin AE, Prakash, S, Milewicz D. 2014. Aortic dilatation and bicuspid aortic valve. N Engl J Med 371;7.
Research topic or question: Bicuspid aortic valve is a distinctive feature in Turner syndrome with a well-established relationship to aortic dilation.

Lin AE, Karnis M, Calderwood L, Crenshaw M, Souter I, Bhatt A, Silberbach M, Reindollar R. 2016. Proposal for a national registry to monitor women with Turner syndrome seeking assisted reproductive technology. Fertil Steril 105:1446-8. doi: 10.1016/j.fertnstert.2016.01.042
Research topic or question: A registry is proposed to monitor the health and risks of women with Turner syndrome who get pregnant.

Prakash SK, Bondy CA, Maslen CL, Silberbach M, Lin AE, Perrone L, Limongelli G, Michelena HI, Bossone E, Citro R; BAVCon Investigators, GenTAC Registry Investigators, Lemaire SA, Body SC, Milewicz DM. 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. [Epub ahead of print]
Research topic or question: The association of bicuspid aortic valve may be influenced by chromosome regions outside of the X chromosome (autosomes).

Abstracts (Posters Presented at a Meeting)

Lin AE, McNamara EA, Steeves MA, Hayes FJ, Levitsky LL, Crenshaw, ML. Karyotype-phenotype analysis in Turner syndrome: Focus on mild mosaicism. Challenges from prenatal diagnosis and infertility evaluations. 37th David Smith Workshop on Malformations and Morphogenesis, UCLA Conference Center, Lake Arrowhead, CA, Sept 9-12, 2016.
Research topic or question: Women with a low level of mosaicism for Turner syndrome generally have a milder phenotype. Challenges exist in providing counseling and clinical care.

Jones KL, McNamara EA, Herrington BL, Miller DE, Abdul-Rahman OA, Levitsky LL, Lin AE. Central and peripheral nervous system tumors in patients with Turner syndrome: A new patient with neuroblastoma and data from the MGH Turner syndrome clinic. 37th David Smith Workshop on Malformations and Morphogenesis, UCLA Conference Center, Lake Arrowhead, CA, Sept 9-12, 2016.
Research topic or question: Studies of cancer in Turner syndrome have been performed using population-based data. New cases from supplement the literature.

Travers LV, Lin AE, McNamara EA, Morgan A, Colvin M. The Neuropsychological Profile of Girls and Women with Turner Syndrome Across the Lifespan.14th Annual MGH Clinical Research Day, Massachusetts General Hospital, Boston, MA, October 6, 2016. AND Travers LV, Lin AE, McNamara EA, Morgan A, Colvin M. The Social-Emotional Profile of Girls and Women with Turner Syndrome Across the Lifespan. Poster for the Society for Research on Adolescence Biennial conference, Portland, OR
Research topic or question: Two complementary studies evaluate the neuropychologic, social, and emotional features of Turner syndrome comparing younger and older women.

Patient Education

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.

Organizations and websites

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

Recommended Books

  • Turner – Know Your Body! An Information Book on Turner Syndrome (Editor, Claus, H. Gravholt, 2009) – 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.

Patient Handouts

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 6B 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 the Patient Service Coordinator Princess Fenton at 617-643-3133.

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, Princess 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

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