Cart 0

Feeling valuable, important and seen in spite of Turner Syndrome


The most familiar and heard medical condition with the word syndrome is often associated with Downs. A lesser known condition which is called Turner Syndrome (TS) Since February is also known as Turner Syndrome Awareness Month, I would like to share information and some personal thoughts on this topic. What is it?

 “Turner syndrome‎‎ (‎‎TS‎‎), also known as ‎‎45,X‎‎, or ‎‎45,X0‎‎, is a ‎‎genetic condition‎‎ in which a ‎‎female‎‎ is partially or completely missing an ‎‎X chromosome‎‎. ‎Signs and symptoms vary among those affected. ‎‎‎‎ Often, a short and ‎‎webbed neck‎‎, ‎‎low-set ears‎‎, low hairline at the back of the neck, ‎‎short stature‎‎, and ‎‎swollen‎‎ hands and feet are seen at birth. Typically, those affected do not develop ‎‎menstrual periods‎‎ and ‎‎breasts‎‎ without ‎‎hormone treatment‎‎ and are ‎‎unable to have children‎‎ without ‎‎reproductive technology‎‎. ‎]‎‎ ‎‎Heart defects‎‎, ‎‎diabetes‎‎, and ‎‎low thyroid hormone‎‎ occur in the disorder more frequently than average. ‎‎‎‎ Most people with TS have normal intelligence; however, many have problems with ‎spatial visualization‎‎ that may be needed in order to learn ‎mathematics‎‎. ‎‎‎Vision and hearing problems also occur more often than average”

Only between 1 to  3  % of Turner’s pregnancies survive miscarriages. 

TS comes with many, really varying personal manifestations.First thing however, as a young  child that you do learn first from the early not knowing is knowing how to accommodate yourself.  A child with a chronic medical condition (though this is also true of all children growing up) needs that extra push and help building their emotional intelligence, esteem and confidence. A great subtle way for this expression, understanding and empowerment is through the arts.

My personal story and struggles as a person with TS started long before my diagnosis at 13 years old. Being physically smaller than my peers was probably a starting point in getting bullied in school. This is compounded by the learning, behavioral  differences and undiagnosed TS.

It all started with that day when at six years old  and over 30 cents lunch money. 

“Give me you lunch money or else I will bring a baseball bat and hit you with it” 

I was a really tiny 6 year old and the bullier was older and taller. Fear sets in real quick and easy. 

It may have been rough but  there were moments that gave me strength and joy. Moments that empowered me. Thanks to two adults that I called my teachers. One of the teachers that was very influential to me was Mr. Khoo. It started at the age of 10, when I built up my courage to audition for the school choir under him  and got in. When I sang, I found my joy, safe space and my power. That is also where I learned about listening. You can’t sing and do three part harmonies in a choir and not listen, look at your fellow choir members. You need to listen and look at each other. He taught us that. He made that little young me feel valuable, important and seen. Each and everyone of his choir girls were that. Even if it were just during the rehearsal hours, during music lessons and during our performances. It felt great. 

From that personal experience, I found that arts helped me from sinking too much into sadness and negativity. It helped me gain perspective and acceptance. Through the songs, lyrics, the piano playing and singing, it  helps me express myself in a positive way, deal with and focus my thoughts, energy. Music was and still is my saving grace.

Even after the TS diagnosis, on top of being a teenager with the emotional and verbal bullying, music with singing and the choir was still there to help and guide me. I was emotionally in a fairly good head space, (perhaps a late bloomer) in emotionally dealing with all the challenges.

That is why as an adult I carry this strong  deep love for the creative arts as a way of healing the child and spirit in anyone. I see any form of the creative arts helps give a hurting child that moment to express themselves and bring healing and positive energy to their lives by giving them some kind of  voice. Making them able to stand a little bit taller and speak a little bit louder. 

Arts also helps with one’s academic learning growth. Arts open the different neuron pathways that help how the brain receives, learns and retains information. I learned a lot about self discovery and what my pace was. I learned, developed the skills of being a self advocate. Personally, without music and the arts stimulating my brain, I would not have academically gotten through the learning process humps throughout my educational years. 

This shows the importance of arts and developing emotional intelligence and esteem. It is needed always in any given situation, however when you factor in a chronic medical situation;  those skills are needed more so than ever in a child in order not just survive growing up but thrive as adults.

You are never what you are born into or with, it should not define you, but you learn and grow from it. 

To read and learn more about TS you can go to  The Turner Syndrome Society of the United States. They have tons of wonderful resources there. Show your love and support for this often least spoken and least understood medical situation. Here are to all the Butterfly Sisters of the Turner Syndrome community and to those who are there to love and support them.

Older Post Newer Post

Leave a comment

Please note, comments must be approved before they are published