We love to form new connections within this community, and partnerships with women and girls sharing their stories on social media are a great way to do just that! Read about those who we have partnered with already and find them on Instagram to follow their journeys. You will also see them on our social media and blog from time to time, helping us to raise awareness and offering insight into the lived experiences of women and girls who have Turner Syndrome.

Madison: Follow her on Instagram @madisonshannon

I’m Madison, I was diagnosed with Turner Syndrome a few days after I was born. The doctors noticed I was a pasty color and I ended up going through my first heart surgery when I was 12 hours old. I then ended up having a second heart surgery when I was 3, and then open heart surgery to replace my aortic valve and had my mitral valve repaired when I was 4, after months of being in congestive heart failure. I am now 20 years old and a junior pursuing an undergraduate degree in psychology. I plan on obtaining my PhD, opening my own private practice and counseling medically complex children and their families.

I want to raise awareness for Turner Syndrome because it is such a huge piece of my heart. So much of my life has been impacted by heart complications related to TS. I struggled through my adolescents and overcame so much adversity throughout my education. My self esteem was affected. I am co-director of our Turner Syndrome Resource Group in Louisville, Kentucky.