My Story: Advice for Patients and Parents | Turner Syndrome Foundation //

My Story: Advice for Patients and Parents

As part of its monthly My Story series, the Turner Syndrome Foundation (TSF) highlights individuals with Turner Syndrome (TS) and their parents/caregivers. In this post, we present the story of Olivia was diagnosed in utero. She discusses how she has navigated life with TS and shares advice for patients and parents.

Note: As always, everyone’s journey with TS is different. This post is not meant to be a replacement for professional medical advice. Please consult with your medical providers for guidance regarding your medical issues and appropriate treatments.

The course of any one girl’s life is shaped by many factors, most of which have nothing to do with a missing X chromosome!

Hello! My name is Olivia and I am an 18-year-old diagnosed prenatally with classic Turner Syndrome (but I turned out to have one of the many mosaic forms with a monosomy X/trisomy X genotype). I am also a student, sister, amatuer baker/singer/seamstress, animal lover, and Christian. I would like to share some advice to others who have Turner Syndrome and their parents.

Every Experience is Unique

Feel pride and contentment with your personal journey and the strength you have needed to make it this far.

I think the main thing I want parents to realize is that this syndrome is not a “sentence” to any one kind of future. It’s a diagnosis linked to dozens of other conditions and symptoms- most individuals with Turner Syndrome have a few, but not all or even most of these. Each person has their own unique genetic and medical picture, as well as the ability to exceed all expectations through self-determination. The course of any one girl’s life is shaped by many factors, most of which have nothing to do with a missing X chromosome! If a child grows up with diverse role models and a supportive family, TS will just be one facet of their life which can never hold them back. 

The biggest advice I have for Turner Syndrome girls is to honor what makes you unique- both from the general population at school or work and from others within the TS community. Feel pride and contentment with your personal journey and the strength you have needed to make it this far. Use your experiences to inspire others and yourself. Let the challenges you face make you more resilient and empathetic, never bitter. And remember to thank everyone who helps you along the way! Gratitude is a powerful way to use a painful situation in a positive manner.

Take Initiative to Learn

I would also advise curiosity. When I was first told about my condition at 12 years old, the confusion and fear of the unknown was worse than anything. As it was, I had to find out most of the pertinent information on my own- even googling my own condition to find out what it was called! Since then, I have spent the last 6 years continually learning more about my body and my rare genetic mutation. 

What TS Has Given Me

[Without TS], my faith would not be as strong, my heart would not be as empathetic, and my mind would not be as determined.

That is one reason why TS advocates and awareness measures are so important- diagnosis and patient education would be much easier to handle if parents were empowered with accurate information and optimism for their child’s future, because Turner Syndrome is not a tragedy. Without this condition, I would not be the young woman I am. I wouldn’t be studying sonography in college to eventually help others on their own medical journeys. My faith would not be as strong, my heart would not be as empathetic, and my mind would not be as determined. I may not like everything that living with TS involves, but I can always be grateful to be exactly who I am, as every butterfly should. 

2 Comments on “My Story: Advice for Patients and Parents

  1. HI Olivia you sound so much like my Olivia !! 🙂 you girls should connect shes 18 too with TS !

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