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My Life Changed After My Diagnosis - by Lourdes Bustos



My name is Lourdes, and I am a 32-year-old Mexican American. I was diagnosed with Turner syndrome (TS) when I was 11 years old. Since I can remember, my mother expressed concern regarding my short stature and issues walking to various physicians, but they just stated I was developing slowly. Nobody else really thought there was anything to be concerned about since I was excelling academically and had no cognitive issues.


I certainly felt like any other child; I socialized normally and could perform tasks my peers could. Even so, my mother persisted in discussing how this made her slightly alarmed to numerous doctors, until one referred me to the endocrinologist that ultimately gave my mother my diagnosis.


I did not realize how much would change after being diagnosed with TS. From the time I was 11 years old until I was 17, my mother injected me with growth hormones, which was an ordeal given I was terrified of shots, but I eventually got used it . An echocardiogram revealed I have a bicuspid aortic valve. Finding this out was, and still is, concerning to me because it means I will always have to make sure my heart is monitored, and I will always be at risk of further cardiovascular complications.


As I became a teenager, the endocrinologist discussed the effects of having low estrogen levels with me; he diagnosed me with amenorrhea and explained it would be almost certain I would have fertility issues. Despite everything that came with being diagnosed with Turner Syndrome, I tried to live life as ordinarily as possible. Fortunately, I have not had any other medical complications and can say I had a “normal” adolescence.


In 2014, I received my bachelor’s degree in political science. I had been working full time since, but felt it was time to continue my education. Today, I am finishing the first year of graduate school to obtain my master’s in social work degree. I am married to a very supportive husband and am contemplating the idea of adoption.

That is my journey, which I share in sincere hope that it can provide insight and support to at least one girl out there that was diagnosed with Turner syndrome.

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