Patient Resources from the Turner Syndrome Clinic at MGfC and Mass General

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: El Síndrome de Turner
• 한국어: 터너 증후군
• Turner Syndrome Mosaicism

Appointments and Your Care Team

• Keeping in Touch With Your Doctor and Care Team
• Preparing for Your First Appointment

Life Skills

• Driving Safely and Confidently With Turner Syndrome

Other Medical Information

• Lymphedema in People with Turner Syndrome: What You Need to Know
• Spinal Asymmetry and Scoliosis in People with Turner Syndrome: What You Need to Know

Tests and Procedures

• Heart and/or Aorta Imaging: What to Expect

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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.
• National Human Genome Research Institute: Turner Syndrome

Transitions

• Transition Self-Assessment - Pediatric 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.