Turner Syndrome Clinic

Epic, Our New Electronic Health Record, Launched October 3

We are excited to launch Epic, our new electronic health record! You may notice us doing things differently, such as using more electronic devices and less paper. As always, your safety is our highest priority and we are here to answer any questions you may have.

If you have an upcoming appointment:

  • Make sure to be at the registration desk no later than 15 minutes before your appointment. This may mean that you need to arrive at the clinic location 20–25 minutes before the appointment, so you can complete parking and entrance procedures before registration. This will help us ensure that your visit can begin on time.
  • Bring your current medication list so we can check our records carefully and make sure everything is correct.

What is Turner syndrome?

Turner syndrome is a genetic condition. It occurs when a girl is born with only 1 X chromosome instead of 2 or is missing part of an X chromosome. About 1 in every 2,000 girls has Turner syndrome.

Girls with Turner syndrome tend to be shorter than average, and most do not go through typical sexual development (puberty). They may have other health problems, such as: 

  • Congenital heart defects: About half of the girls with Turner syndrome also have some type of structural problem with their heart, such as bicuspid aortic valve or coarctation of the aorta.
  • High blood pressure (hypertension)
  • Thyroid problems (hypothyroidism)
  • Hearing and vision problems
  • Structural differences in the kidneys
  • Problems with the fat levels (lipids) in the blood
  • Lymphedema (especially in the feet and hands)
  • Differences in bone development
  • Learning difficulties, but otherwise usually have normal intelligence 

As an adult, they also have a higher-than-average risk of diabetes, obesity, coronary artery disease and stroke.

There is no cure for Turner syndrome. But with appropriate medical care, girls with this condition live full and productive lives. 

Turner Syndrome at Seattle Children’s

Most families have never heard of Turner syndrome before their daughter is born with it. Our team is experienced in caring for girls with Turner syndrome from birth through age 21.

Services We Offer

At each appointment, you and your child will meet with the endocrinologist, cardiologist and geneticist/genetic counselor to coordinate care and medicines and to answer your questions.

Services provided through the clinic include: 

  • Hearing screening and care
  • Hormone therapy to address growth and development
  • Heart screening and treatment, including echocardiography
  • Lifestyle management for a healthy heart
  • Genetic counseling
  • Reproductive counseling
  • Screening for autoimmune thyroid disease
  • Bone health management 

The Turner syndrome clinic meets 12 times a year: 

  • Eight times a year at Seattle Children’s hospital campus
  • Four times a year at Seattle Children’s North Clinic in Everett, Washington
  • Clinic visits are 2 to 3 hours.

Meet Your Team

Members of the Turner syndrome clinic have special training and experience working with girls who have Turner syndrome and their families. The team includes:

Pediatric endocrinologists 

Pediatric cardiologist 

Geneticist 

Neurodevelopmental specialist

We will coordinate with specialists in other medical disciplines as needed.

Resources for Patients and Families

Contact Us

For questions regarding Turner syndrome, please contact the Heart Center at 206-987-7693, and mention the Turner Syndrome Clinic when leaving a voicemail.

For questions pertaining to Turner Syndrome Clinic scheduling, please call a Heart Center scheduling coordinator at 206-987-0359.

Telemedicine at Seattle Children’s

You may be offered a telehealth (virtual) appointment. Learn more.