Turner Syndrome (TS) is a condition caused by the complete or partial deletion of the second sex chromosome. The karyotype is mostly 45,X, but also different forms, especially with mosaicism like 45,X/46,XX or 45,X/46,XY have been described. Rarely, the latter patients may live in a male gender. The incidence of TS is approximately 1:2000 live births.

TS was first described in the United States in 1938 by Dr. Henry Turner, an American endocrinologist. Earlier [1930] a German paediatrician, Otto Ullrich, had described the same physical characteristics in female patients. Therefore, TS is sometimes also known as Ullrich-Turner syndrome.

On the following pages you will find collected information about Turner syndrome from different sources and different countries. This information contains, recommendations, educational training materials and hyperlinks to patient organisations.

The copyright has been observed for documents from third parties. For links to external websites, the copyright on these pages must be respected. No responsibility can be taken for the content of external websites, as we have no influence on them.
The country codes at the end of the pdf’s indicate the language of the document!
(Source references: Turner Syndrome Support Society (UK), Orphanet, Claus H. Gravholt, DSD-Life)

Information on the rare condition

Turner – know your body!

Turner – know your body is an information book on Turner syndrome. The book has been written for girls and women with Turner syndrome, for their families, for the GP who follows a patient with Turner syndrome, for the paediatrician who meets the child with Turner syndrome, and for all doctors, nurses and care providers who come into contact with people with Turner syndrome. One goal has been to disseminate the most recent scientific knowledge to all laypersons with an interest in Turner syndrome. (Editor: Claus H. Gravolt)

Further links:

Recommendations/information for school, travel, nutrition etc.

Literature recommendations in German:

  • Angelika Bock, Leben mit dem Ullrich-Turner-Syndrom, 1. Auflage. – Ernst Reinhardt Verlag 2002. – 102 S. ISBN/EAN 9783497016181
  • Anne-Christin Ermisch, X-MAL ANDERS, Ullrich-Turner-Syndrom! Ja, und?!, Edition winterwork 2017. – 144 S. ISBN/EAN: 9783864688164, www.xmalanderssein.de
  • CD – Forever in my heart (relaxing music, available from the Turner-Syndrom-Vereinigung Deutschland e.V.)
  • Für jugendliche Mädchen mit Ullrich-Turner Syndrom (Brochure available from the Turner-Syndrom-Vereinigung Deutschland e.V.)
  • Ullrich-Turner-Syndrom, Merck (Guidebook, available from the Turner-Syndrom-Vereinigung Deutschland e.V.)
  • Ullrich-Turner-Syndrom, SANDOZ (Guidebook, available from the Turner-Syndrom-Vereinigung Deutschland e.V.)

Recommendations for daily use:

Medical certificate can be found here].

Educational materials

Videos on YouTube in English:

Further links:

Patient organizations