Let's Educate and Advocate for Ourselves - by Courtney Gilbert
I was not diagnosed with Turner syndrome (TS) until I was 31. Prior to that, I was a healthy and average girl. In August 2019, I was out to dinner with my family and had a severe and sharp pain in my back. I was so overcome by pain I couldn’t walk or talk.
I went to the ER and was eventually placed in the cardiac ICU where it was discovered that I had an aortic dissection. None of the doctors could find a reason why a young and otherwise healthy girl would have this happen. They told me to go home and take medication for my “situational” high blood pressure. I chose to have a second opinion at another hospital in November 2019. He noticed my bi-cuspid aortic valve (BAV) and set me up with a surgeon - all in one appointment.
My blood work came back and confirmed this doctor’s opinion; I had Turner syndrome. At the end of January 2020, I met with the surgeon, and I was on the operating table the next week on February 7, 2020, to replace my BAV. Surgery went flawlessly.
Unfortunately, I still had the actual dissection to repair, and had that repaired in January 2021. I had 2 massive heart surgeries in less than a year which, was incredibly hard on my body and mind. I am so very thankful for my dream team of doctors that listened to me and took me seriously. I am so lucky to be alive and I hope my story can help women like me educate and advocate for themselves.