Amy and Chris are the parents of Avary, a wonderful, now four-year-old little girl who has Turner Syndrome (TS). They have long been advocates for TS awareness, having navigated the stages of coping with diagnosis, finding care, and parenting a child with the condition. We asked them for tips on finding answers to questions about Turner Syndrome, which inevitably are many. Keep reading to learn about some resources you might turn to.
So Many Questions!
When our daughter was first diagnosed, at birth, we didn’t know anything about TS, or where to find answers. It was very overwhelming, confusing, and stressful, and we had many questions. We followed a schedule for services, specialists, and doctors and just found answers as we went along. Most of our answers came from our daughter’s specialists, if they were able to answer them. If they couldn’t, we would Google questions, which eventually led us to websites and foundations such as the Turner Syndrome Foundation (TSF). I honestly wish we had known about this great wealth of information when our daughter was born; the TSF website has an abundance of resources and answers.
Using Social Media To Find Support
If you want to get more personal, individualized answers and information, I recommend joining social media groups. I am really not a social media fanatic, but if you were to ask me what I search for the most on Facebook, it would be TS support groups. Many parents and women with TS are willing to share their experiences and personal information; as a result, we have built connections with other families and a nice support system. We have come to value their opinions and experience and feel a sense of relief that we are not alone, which is extremely reassuring. It is amazing to see how a group of people can come together from all over the world, and from all ages and stages of life, to share opinions and information.
There are many resources available for finding answers to your questions about Turner Syndrome. You just have to be willing to participate, speak up, and know where to look.
Written by Amy, mother of a girl with TS.
In this series, Amy has shared many other aspects of her daughter’s journey with TS. Read about finding the right doctors for her daughter.
If you have a specific question, click the button below to contact TSF, and we will do our best to direct you to a resource that can help you.