My Story: “It’s Rewarding to Help Others”

turner syndrome advocate
A Turner Syndrome Advocacy Volunteer Shares Her Story

My name is Kym and I was diagnosed with Turner Syndrome at 16 years old. I was born the youngest of six with my twin brother in 1971. Growing up I showed some signs of Turner Syndrome, but doctors never put it together. I was always the shortest in my class, had a webbed neck, and experienced hearing problems.

At 16, my mom was concerned about my growth and puberty. I had a DNA test, which finally confirmed my Turner Syndrome. It was scary at first not understanding Turner Syndrome and being a teenager. Luckily, I learned quickly not to let it stop me. Meeting others with Turner Syndrome helped me as well. I went to college got my BA and Masters in Counseling.

I am currently a retired teacher and a volunteer advocate for the Turner Syndrome Foundation in my home state of New Jersey. We were instrumental in getting a bill passed that made February Turner Syndrome Awareness Month in New Jersey. I phoned, emailed, and even testified in front of the NJ Senate. Currently, I volunteer by talking with others about Turner Syndrome for the TSF.

I want every Turner Syndrome baby to have the advantages I didn’t have due to my late diagnosis. I have a passion for awareness and hope to help girls receive a much earlier detection. It is rewarding to help others.

Like Kym, you can be the change and influence the future of Turner Syndrome care. The easiest way to get involved is by making a donation today. Your support allows TSF to continue offering support and resources to volunteers like Kym who are dedicated to making a difference.

7 Comments on “My Story: “It’s Rewarding to Help Others”

  1. Hi Kym, I found out at 9 nears old I had Turner Syndrome. I am currently 35 years old with hearing loss ,high blood pressure ,dibeties , and thyroid issues.I also had Ivf with donor egg and lost daughter at 9 months along due to cord accident. 5 years has passed since then and now have a 9 month old adopted Daughter. I did get my assoccates degree in computer applications and administrative managment. I am currently a stay at home mom. It took everything for me to be working. I figured as hard as I worked for my daughter I did not want to miss anything. This journey of Turner Syndrome has not been easy. I do feel it makes us stronger. Ts love Christina Tilley

  2. Hi my name is Mariana Fonseca and I was diagnosed with Turner syndrome at the of 10 I would to be more involved and informed !!! I am 34 years old and would love to meet other girls going through the same issues thank you

  3. Hi Kim, Like you I’ve been diagnosed with Turner Syndrome at 16. I have a mosaic, but the length, i.e. the shortage of it, led to a Chromosome test and diagnosis.
    I never got the support of other Turner Women, but managed to cope. I also have hearing loss, which started at the age of 17/18 and got worse over the years and I write about my hearing loss since a couple of years. Now I’m 50+ and this has its challenges as well. I like to be informed how other Turner women of my age cope. Renee

  4. Thank you! I am on Facebook, but not from the USA (Switzerland actually). I will check out the other two links!

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