I Decided I Would No Longer Hide my Turner Syndrome - by Deimante Sefleryte

Hi, my name is Deimante, and I am from a small town in Lithuania in Eastern Europe. I got the diagnosis of Turner syndrome (TS) as a baby. Because my feet were very puffy, my amazing pediatric doctor encouraged my parents to find the reason for my feet being different. This doctor had no idea what I had since I am sure in my small town there were not many cases of TS, but she encouraged my family seek answers.

They searched for many long months. My mom's worries and tears did not stop at the diagnosis. Back in the 90's, the internet did not exist, so resources to connect with people in similar situations were still not available. The pamphlets my mom was given were scary and my medical fate was still unknown. There were no support or professional groups in Lithuania at all.

One questionable suggestion a doctor made was telling my parents it would be better not to disclose my Turner syndrome to many people, and that’s what my mom told to me to do as well. In a way, I understand the decision since I was growing up in a different time.

Since Lithuania is a small country, it’s easy to find medical resources and luckily, I had all tests and screenings done according to the medical guidelines because my physicians went to these international medical conferences and knew all the right information. I didn’t have many issues - I took growth hormone for years, (I am still traumatized by these needles, but it's okay), and I did have some kidney infections due to my horseshoe-shaped kidneys.

Luckily, I didn't need to grow anymore and I am almost 4'11" if I really push it, and I have outgrown my kidney issues as well. Even though I didn't have too many medical issues growing up, without any society like TSSUS, it soon felt lonely. Not only had I not met anyone with Turner syndrome, I was also hiding my condition from the world, and it was tiring.

Eventually, during my teenage years, I declared to my mom that I would not hide TS any longer. I spent a lot of time learning English by trying to connect with American and British girls who had TS. At that point, I had the idea that I would end up in America. I look back at those messages I sent to a few girls back in the day and I can only laugh how little English I knew! I knew the language barrier was a problem keeping me from making connections, so I started a forum for Lithuanian girls with TS.

Lithuania eventually got a doctor willing to start an actual nonprofit organization for us, and it allowed us to have a centralized group. She did the heavy lifting of creating the organization, but my forum was the catalyst of the change, and I am proud of that accomplishment. Unfortunately, I moved to the United States, so I barely had a chance to meet these wonderful women. I did have the chance to have lunch with them when I was back there for a visit, and it was a great day.

As for me, I am currently 25 and I am living a great life. I still must make sure I am on top of my health because I just got diagnosed with osteoporosis. I am independent and I bought my own place over a year ago, and I have a great job in insurance sales. I have a few great friends and an amazing boyfriend, and there is nothing else I could ask for at the moment. I am always forever grateful for the TSSUS National Turner Syndrome Conferences I started attending when I moved to the USA because it allowed me to make great friends and helped with my self-acceptance.