Patient information materials

Information materials on MTG7: Sex Development & Maturation

 

1. Sex chromosome DSD Turner syndrome

a. Information on the rare condition

b. Recommendations/information for school, travel, nutrition

c. Educational materials

d. Patient organizations

 

1. Sex chromosome DSD: Turner syndrome

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)

a. 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)

1.a Turner-knows your body! – an information book (GB)

1.a Turner-knows your body! – an information book (DK)

1.a Turner-knows your body! – an information book (IT)

1.a Turner-knows your body! – an information book (BG)

1.a TSSS Diagnosing-TS (GB)

Further links:

Radboudumc Center of Expertise Disorders/differences in sex development (DSD)

About DSD life

 

b. 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:

1.b TSSS How to Help Your Child Survive and Succeed in School (GB)

1.b TSSS Who is the woman I am less than anyway (GB)

1.b TSSS Buying Shoes Card (GB)

1.b TSSS Employment Booklet (GB)

Medical certificate in : https://res.cloudinary.com/adacde/image/upload/v1571836599/ADAC-eV/KOR/Text/PDF/Formular-Aerztliches-Attest_Texteingabe_yqscjq.pdf

 

c. Educational materials

1.c TSSS_Paediatric &_Adult_Health_Checklist – Printable (GB)

1.c Patient Family Version TS Care Guidelines (GB)

1.c No 1 TSSS Factsheet Pubertal Induction (GB)

1.c No 2 TSSS Factsheet Practical Tips For Pubertal Induction (GB)

1.c No 3 TSSS Factsheet Footwear and Food Care Advice for Girls (GB)

1.c No 4 TSSS Factsheet Footwear and Foot Care Advice For Women (GB)

1.c No 5 TSSS Factsheet Spatial Awareness (GB)

1.c No 6 TSSS Factsheet Disclosure (GB)

1.c No 7 TSSS Factsheet Top Tips On Coping With Tiredness (GB)

1.c No 8 TSSS Factsheet Problems With Feeding (GB)

1.c No 9 TSSS Factsheet Speech and Language (GB)

1.c No 10 TSSS Factsheet Genetic Counselling (GB)

1.c TSSS BUNGLE PACK 1 Pre Natal Tests (GB)

1.c TSSS BUNGLE PACK 2 Diagnosis of TS at Birth (GB)

1.c TSSS BUNGLE PACK 3 Consider pregnancy (GB)

1.c TSSS BUNGLE PACK COVER Folder Intro and acknowldegments (GB)

1.c Every picture tells a storybook (GB)

1.c TSSS Turner Syndrome – lifelong guidance and support 2nd edition (GB)

1.c TSSS So you are considering a partnership what does Turner Syndrome mean for us (GB)

 

Videos on YouTube in English:

Health Sketch Video 1: Turner Syndrome

Health Sketch Video 2: Growth hormone for Turner Syndrome

Further links:

Turner Syndrome Support Society

Turner Contact Nederland

 

d. Patient organizations

United Kingdom: Turner Syndrome Support Society

Germany: Turner-Syndrom-Vereinigung Deutschland e. V.

France:  Association “Turner et Vous”

The Netherlands: Turner Contact Nederland

Ireland:  Turner Contact Group Ireland

Italy: APADEST – Associazione Piemontese Amici della Sindrome di Turner

Spain: Asociación de Síndrome de Turner de Andalucía

Further links:
Orphanet

Turner Contact Group Ireland