Book: "The Silent Syndrome"
Written by Cheryl Jost, former Turner Syndrome Society of St. Louis Chapter President
This book is a heartwarming story of one TS womans journey of agony and pain, acceptance, and unconditional love. Join her as she educates you about TS and tells you about her unbelievable voyage across the world to finally find her two amazing children and the relentless dedication to achieve the family she and her husband always dreamed of. This voyage created a deep passion to support other TS families and allowed her to meet some incredible people along the way. This book will describe how her diagnosis of TS allowed her to educate the public about this rare chromosomal disorder with accurate information, break down TS stereotypes/misconceptions, and bring hope and support to newly diagnosed TS families. She has been fortunate to do this in many ways and continues doing so today on a national level through the Turner Syndrome Society of the US (TSSUS).
This is an opportunity to share with TS individuals and their family and friends her story of living with TS and the true and honest feelings revealed through different life experiences and its affects. You won't want to miss this intriguing story of an amazing roller-coaster ride of discrimination, three emotional IVF attempts, the miracle of how she and her husband found their two adoptions, and the awesome work being done today to help TS individuals lead a normal and productive life.
This book will also offer a wide range of medical and support resources and offer hope and inspiration to newly diagnosed families who think they are out there all alone raising their TS daughter.
$3.99 E-Book, $15.99 Paperback, $24.99 Hardcover
You can purchase your own copy of Cheryl's book at:
Book: "Turner Syndrome: Across the Lifespan"
This book is a must have for any woman with TS or parent of a girl with TS! It breaks down all the various symptoms of TS into each individual chapter so you can get a full understanding of the syndrome. Very easy to read and informative! Topics include genetics, growth, heart health, thyroid issues,
puberty, infertility, bone health, diabetes, hearing, skin issues, school and learning issues, and many more. Highly recommended!
To see a sneak peek into the book, click on the download below!
Book: "Coley's Story"
This booklet is full of photos and an upbeat description of what it's like to have TS from a 4 year old's perspective. For any young girl with TS, this book is guaranteed to become their favorite! It helps young girls with TS relate to other children who are going thru the same issues. A great tool for parents trying to explain TS to a young child!
To see a sneak peek into the book, click on the download below!
Book: "A Guide for Girls with TS: Ages 11-15"
This booklet will help teens understand Turner Syndrome and give them an idea of what it means to be a teenage girl with Turner Syndrome. It will provide teens with input and advice from other girls and women with TS about the issues they face and how they cope with them. A great tool for teens trying to understand how Turner Syndrome fits into their life!
To see a sneak peek into the book, click on the download below!
Other Turner Syndrome Organizations
Turner Syndrome Global Alliance
TSGA was founded by parents of girls and young women with Turner syndrome.(TS) We aim to have a direct impact on the lives of girls, women, and families living with TS by working to include TS in the national conversation on genetic research. We are the voice for a patient and parent perspective as we seek collaboration with scientists, researchers, and doctors to ensure that TS research and resources have meaningful outcomes.
Turner Syndrome Foundation
The goal of the Turner Syndrome Foundation is to support research initiatives and facilitate education programs that increase professional awareness and enhance medical care of those affected by Turner syndrome.
Turner Syndrome Society of the United States
The Turner Syndrome Society of the United States is a national non-profit organization that provides health-related resources to patients, families and physicians for the diagnosis and treatment of Turner Syndrome. There are chapters and support groups located throughout the country. TSSUS holds an annual conference with speakers from a variety of professions including medical experts, social workers, educators and psychologists. These meetings provide an opportunity to exchange information on many topics of interest to TS patients of all ages.
Resources
My Growth Charts
The most advanced free software for capturing and charting measurements of height, weight, head circumference and BMI. Save data and track growth online. Grant temporary or permanent access to friends, family or physicians. Access WHO, CDC and specialty charts, including Turner Syndrome Growth Charts.
"In Case of Emergency" App for your Smart Phone
This free app for your smart phone is dedicated to the victims of the Boston Marathon Bombing and developed by a non-profit organization called About the Kids Foundation. It puts your emergency contact info as well as critical medical information on the lock screen of your cell phone. Blood type, allergies, medications, health conditions, etc. It was developed for first responders, EMTs and Emergency Room personnel to know quickly who you are and any health concerns when they first get to you in an emergency. If you are in a 911-Smart Phone Area when you call 911 from your cell phone, this fanstastic feature allows your phone to automatically transmit the emergency contacts, home address, blood type, medications, allergies, known medical conditions, etc. to the dispatcher so EMS personnel will know your critical medical information before even reaching you! This is a great tool for anyone with a known medical conditon such as Turner Syndrome!