Not too long ago, Colleen J followed me on Twitter.
I immediately checked out her Twitter feed and her website. Tears welled in my eyes. She is a 17-year-old young woman living with Turner syndrome. I have Turner syndrome. I have written about Turner syndrome in my memoir The Stage Is On Fire, but rarely talk about it. Colleen has found the strength to reach out and share her story at an age I could not. I understand what that takes. I still struggle to tell the story.
Turner syndrome is a chromosomal condition that exclusively affects girls and women. Turner syndrome occurs when one of the two X chromosomes normally found in females is missing or incomplete.
- Turner syndrome affects 1/ 2,500 live female births.
- There are over 71,000 women and girls living with Turner syndrome across the United States.
- It is estimated that only about 1% of fetuses with only one X chromosome survive to term and that approximately 10% of all miscarriages are due to Turner syndrome. (Fact Sheet, Turner Syndrome Society of America)?
In general, girls and women living with Turner syndrome are short in stature and are infertile. Complications due to Turner syndrome may include heart defects, kidney problems, spatial/cognitive difficulties, diabetes, dry eyes, and hearing/ear issues. Turner syndrome is not hereditary.
I participated in an inpatient Turner syndrome study at the National Institutes of Health in 2007 to figure out exactly how Turner syndrome impacts my body. My results were mainly positive. My heart, which is one of the main considerations with Turner syndrome, functions normally. I learned many years ago that I am infertile, so that was not surprising. My kidneys are fine. I am prediabetic. I have significant hearing loss at the pitch level of the human voice. I am blessed.
I see my story in Colleen’s story. Her courage to tell her story inspired this post.
Colleen features the Natalie Merchant song Wonder on her site. Her biography explains that her father and mother introduced her to this song as a child. She writes, “I actually think of how lucky I am when I hear it. It reminds me of, well, me!”
They say I must be one of the wonders
Of god’s own creation
And as far as they can see they can offer
O, I believe
Fate smiled and destiny
Laughed as she came to my cradle
Know this child will be able
Laughed as my body she lifted
Know this child will be gifted
With love, with patience and with faith
She’ll make her way
A brief glimpse of her website and Twitter feed make several things very clear. She is perfectly open about her trouble with math, her ear infections, and her love of country music. She aspires to write. She loves to read. She provides encouragement to a network of girls and women who live with Turner syndrome.
An assignment in a writing class I was taking a few years ago presented me my first opportunity to share my Turner syndrome story. We were asked to respond to a prompt about being 15. For me, 15 was about diagnosis, fear, and silence. I remember being so caught up in wanting to be “normal” that I never spoke out. I wanted to go out with my friends, not talk about hormone replacement therapy and bone degeneration. I certainly did not want to investigate whether I had any major issues with my heart or kidneys. The text books chapters of women living with Turner syndrome presented a picture of a club to which I did not want to belong. So I shut up. I was very scared. Colleen is taking control of her story in ways I did not do at 15.
My story has played out differently than the statistics suggest. I am not supposed to have the cognitive ability to have earned a PhD. My heart is not supposed to have been strong enough to run a marathon. Simply being born was probably improbable. I have blazed my own trail despite living with Turner syndrome. I sense that same fire in Colleen.