TSSUS Blog 

My daughter, Audrey came into the world in September 2006. My pregnancy with her was extremely easy with no complications. Even the ultrasounds showed that everything was fine, and we were thrilled to be having our second daughter. About 3 weeks before her due date, I went into labor, and on September 9th, Audrey was born. She was so tiny, weighing only 5 pounds and 10 ounces. It wasn’t long before we realized that Audrey was going to be a fussy baby. She cried virtually nons

Collecting and editing these “My TS Stories” during Awareness Month and throughout the year for other Turner Syndrome Society communications like the TSS Connect Newsletter and the e-newsletter is something I’m passionate about, and something I usually enjoy. Doing this work and sharing your stories here is both an honor and a privilege. Many of you who’ve submitted your stories know I’ll often call or email you asking for a bit more - I’ll ask for a photo, or a photo witho

I wanted to introduce myself and thank you for welcoming me into the Turner syndrome community of strong, empowered, and overcoming women. My name is Dannelle, I was diagnosed with Turner syndrome at 4 years old. As a child, I had frequent ear infections, both of my eardrums are ruptured, and I thank God that I can still hear. I have Meniere’s disease, and get vertigo sometimes. I started on growth hormone when I was about 11 years old. It was very beneficial, but was not wit

Several years ago, our daughter Berlyn, was diagnosed with TS. This of course was a great shock to us at first and created a tremendous amount of confusion, stress and anxiety. My wife and I had never heard of Turner syndrome before Berlyn’s diagnosis, so this was something very foreign to us both, and we did not know what would lie ahead. Our foremost concern was for Berlyn, and any major ongoing health concerns and obstacles we would face as we would take the TS journey tog

A few days ago, we received a call from a woman who was grieving the loss of her son’s new wife – her young daughter-in-law who suddenly passed away a few days before Christmas. She was only 26 years old. She couldn’t understand why articles and information offered about aortic aneurysms and dissections associated with Turner syndrome (TS) make the condition sound so rare. Her family is grieving the loss of a wife, an aunt, a daughter/sister-in law and friend. She now believ

The other day I mentioned that Ella had Turner Syndrome in an Instagram post. I received so much positive feedback and questions that I wanted to share our story. I always debate on sharing, or how much to share, because I don’t ever want Turner syndrome to be something that defines her or holds her back, but rather something that she has, and that can be shared to encourage others. Most people in our life are like me; they have questions and had never even heard of TS until

Growing up, I always knew there was something different about me. I had a major surgery when I was five years old to correct a kidney problem. I saw a urologist every year to manage other issues I had, including a horseshoe kidney and frequent urinary tract infections. When I was about eight years old, I was diagnosed with Turner syndrome. From what I understood about it, Turner syndrome wasn’t bad at all. So, I told myself I wouldn’t let it get in the way of my living a norm

This is the hardest thing that we will ever share, but we share our story for two reasons: The most important is to honor the love and happiness that our baby brought into our lives. The other reason is that we will begin to heal as we share. On April 13, 2017 my husband and I found out we were expecting our first baby. The emotions we felt that day will never be forgotten. On May 8th, we had our first appointment and we got to see and hear our baby's heartbeat. Our doctor sa

When I was 16 weeks pregnant, a blood test revealed elevated protein levels. Initially, doctors suggested this might be an indication of Down syndrome so, after much discussion with my husband, we decided to have an amniocentesis. Once the results came back, we knew our daughter did not have Down syndrome, but we were told she did have two other conditions – Turner syndrome and Triple X. The genetic counselor who gave us the results obviously didn’t know much about either con

I sat at our light-brown, circle, kitchen table. My family was smiling and looking at me reassuringly. It was nighttime and the kitchen lights were dim. I was done with a long day at school as a newbie in seventh grade at middle school. They were going to tell me news that I was anticipating to hear from tests I had at the Children’s Hospital in Pittsburgh over the summer. Various thoughts of what the doctors found had been racing through my head for the few weeks I knew the