As part of its monthly My Story series, the Turner Syndrome Foundation (TSF) highlights individuals with Turner Syndrome (TS) and their parents or caregivers. In this post, Eileen, a 44-year-old woman who was diagnosed with TS at 16 years old, shares her story and reminds us that women with TS are unstoppable!

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

“Women with TS can do anything; we are unstoppable!”

Eileen, woman with TS

My Childhood and Diagnosis

I was not diagnosed with TS until I was 16, after having several medical issues growing up. As a toddler and young child, I attended speech therapy due to delayed speech. I also have lymphedema, which my doctors diagnosed when I was around age nine. I had not yet gotten my period by the age of 16, so my doctors ordered blood work, which indicated that I had TS. The hardest part of the diagnosis for me was accepting the fact that I would probably be infertile; I had always wanted to be a mom.  

Finding Support

As an adult, I have had my share of ups and downs due to TS. In my early 30s, I found out I had high blood pressure, for which my doctors prescribed medication. At that time in my life, I found the TSF and the Turner Syndrome Society of the United States (TSSUS) on Facebook. Both of these groups have been a wonderful source of support. I have been blessed to be able to attend several of the amazing TSSUS conferences. TSF has offered me another group of amazing women I can relate to and many resources for living with TS. I love meeting and building friendships with women who truly understand what I go through on a daily basis. I am so glad that they are in my life, even if it is only through Facebook.

Finding Love

I have heard some women with TS say that dating is difficult because of their anxiety. I experienced the same due to my issues with weight and self-confidence (which I am still working on). In 2012, I met my husband Steve through another woman with TS named Kimberly. She was an amazing person who said I was like her little sister. She was several years older than me. Unfortunately, Kimberly passed away from kidney issues. About a year after we were introduced, Steve and I reconnected, and in December of 2015, we were married at beautiful Lake Las Vegas. Steve was previously married to another woman with TS, so he understands the issues we face and is happy to support the TS community.

Dealing with Infertility

Shortly after we got married, we became foster parents, which I thought would help with my feelings about infertility, but we only had the kids for close to three years. They ended up going to another family, which was hard on me. I am still emotional about it to this day. This situation, by far, has been one of the hardest to deal with. Steve knew from the start that I had TS and probably would not be able to have children. Because I have a mild case of aortic stenosis, I’m not sure if my doctor would have approved IVF. I am fortunate to have the support of my hubby and both of my TS groups, since several of the ladies have been in similar situations. Right now, we are happy with just our fur babies.

Facing the Challenges and Moving Forward

TS has given me the opportunity to connect with amazing support groups. And because of one of those support groups, I now have an amazing husband, with whom I just celebrated five years of marriage. There are certainly some challenges in dealing with a TS diagnosis, but what I have learned through all of these experiences is to do my best to look at the positive. Several years ago, I started Weight Watchers and ended up losing 50 pounds, which made me feel so much better, physically and mentally. While my weight is always a struggle, that achievement gave me a lot of confidence. I know many amazing women with TS who are teachers, doctors, etc. and are doing so much for their communities. Women with TS can do anything; we are unstoppable!

Written by Eileen, a woman with TS, and edited by Susan Herman, TSF volunteer blog post editor and translator.

For more information on living with TS, click here.

To read more My Story blog posts, click here.

For more information about foster care, visit the Child Welfare Information Gateway’s website and the appropriate child welfare agencies in your state.