My Story: Never Stop Fighting

As part of its monthly My Story series, the Turner Syndrome Foundation (TSF) highlights individuals affected by Turner Syndrome (TS). Meet Kym, a TSF volunteer from NJ who will never stop fighting for increased awareness and earlier diagnosis.

Note: Everyone’s journey with TS is different. Please consult with your health care provider(s) for guidance regarding your health issues and appropriate treatments.

My Diagnosis

My Name is Kym. and I was diagnosed with TS at the age of 16. I was born the youngest of six with my twin brother in 1971. My parents noticed some signs of TS as I was growing up, but my doctors never put it together until 1988. I was always the shortest in my class and had a webbed neck and hearing problems. My mom was concerned about my growth and puberty, so off to the doctors we went. They did a DNA test, which confirmed TS. It was scary at first, being a teen and not understanding the condition. However, I learned quickly not to let it stop me. Meeting others with TS also helped me. I went to college and earned my Bachelors Degree and a Masters Degree in counseling.

Facing Infertility

Infertility was disheartening and upsetting, as is the case for many individuals with TS. I learned of my infertility upon diagnosis at age 16 and cried for the children I would not have. But then I focused on the positive and the knowledge that children and families come in many different ways.   

Advocating for TS Awareness

Kym (front center) with Laura Fasciano, Director and Founding President of TSF (front right), and other advocates who helped pass the TS Awareness Month bill in NJ in 2012

I am currently married to a great husband and am a retired teacher and a TSF volunteer in my home state of New Jersey. With TSF, I helped get a bill passed that makes February TS Awareness Month in New Jersey. Then-NJ Governor Christie signed Turner Syndrome Awareness Bill AJR6 (NJ Revised Statutes Section 36:2-219) in 2013. We must never stop fighting and advocating for those affected by TS.

I want every baby with TS to have the advantages I didn’t have due to my later diagnosis. I have a passion for awareness and hope to allow for much earlier detection and diagnosis of TS. We must never stop fighting for this.

For more of Kym’s story, check out the Turner Diaries YouTube video produced by TSF in 2010.

Written by Kym, a woman with TS and TSF volunteer. Edited by Susan Herman, TSF volunteer blog writer and editor.

To learn how to become involved in the Turner Syndrome Community, click here.

To read more of TSF’s My Story blog series, click here.

2 Comments on “My Story: Never Stop Fighting

  1. Kym says what she means and does what she says! She is an exceptional woman and advocate for TS!

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