Turner syndrome

Healthcare/Doctors

How do I find a center of excellence in Turner syndrome?

The best way to obtain the most accurate, current, clear, and comprehensive information on Turner syndrome is to be seen at a Turner syndrome clinic at certain hospitals or medical centers. One of the best ways to find a treatment center or physician with experience in treating Turner syndrome is to contact a support group. Supports groups for Turner syndrome include: the Turner Syndrome Society of the United States, Turner Syndrome Foundation, The Turner Syndrome Society of Canada, and the Turner Syndrome Support Society of the UK.

References
  • Turner Syndrome. The National Organization for Rare Disorders website. https://rarediseases.org/rare-diseases/turner-syndrome/
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What doctors do I need to see to manage and treat Turner syndrome?

What doctors do I need to see to manage and treat Turner syndrome?

Rare diseases that affect multiple organ systems like Turner syndrome can benefit from a multidisciplinary approach. This approach involves healthcare professionals with specialized skills and expertise. They work together to make treatment recommendations and to provide quality care of individuals and families. The specific doctors who will treat a person with Turner syndrome depends on the specific symptoms in an individual.

A multidisciplinary team for Turner syndrome may require a specialist who can assess and treat disorders of the heart and blood vessels (cardiologist); a specialist who can assess and treat disorders of the bone, joints and skeleton (orthopedist); a specialist who can assess and treat disorders of the ear, nose, and throat (otolaryngologist); a specialist who can assess and treat disorders of the kidneys (nephrologist); a specialist who can assess and treat disorders of the brain and central nervous system in children (pediatric neurologist); a specialist to diagnose and treat the hormonal issues (pediatric endocrinologist; adult endocrinologist); a specialist who can treat hearing loss; a specialist who can diagnose and treat disorders of the eye in children (pediatric ophthalmologist); a genetic counselor who can help people understand the disease and the implications for the person; a metabolic disease specialist; a social worker; obstetrician and gynecologist: and a psychiatrist.

Talk to your doctor about the best specialists in your area to follow an individual with Turner syndrome.

References
  • Turner Syndrome. Merck Manual Professional Edition website. http://www.merckmanuals.com/professional/pediatrics/chromosome-and-gene-anomalies/turner-syndrome
  • Backeljauw P. Management of Turner syndrome. UpToDate Inc. website. http://www.uptodate.com/contents/management-of-turner-syndrome
  • Turner Syndrome. The National Organization for Rare Disorders website. https://rarediseases.org/rare-diseases/turner-syndrome/

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