My Story: Never Let a Diagnosis Get in Your Way

As part of its monthly My Story series, the Turner Syndrome Foundation (TSF) highlights individuals with Turner Syndrome (TS) and their parents/caregivers. This month, we present the story of Maria, a 29-year-old woman with TS. Maria discusses how she has coped with the challenges posed by her TS diagnosis, including Nonverbal Learning Disorder (NVLD), to follow her dreams.

Signs During My Early Years

From the time I was a newborn, my mother noticed I had many developmental delays. She worked tirelessly, taking me to the finest specialists in the country. Since I was the second child in my family, she noticed I was reaching certain milestones at a slower rate than my older sister. Many doctors thought that I would eventually catch up to her. I had a fulfilling childhood. I enjoyed playing with baby dolls; many young girls dream of becoming mothers some day. My doctors and specialists initially thought that I had characteristics of Autism Spectrum Disorder. I saw physical therapists in Madison, Wisconsin and child psychologists in Chicago and Washington, D.C. to find answers. I was diagnosed with NVLD, which affected my social skills, schooling, and visual memory, in second grade.

My Diagnosis and School Years

Even though I was shorter than most of my peers, I had many friends in school. In middle school, my pediatrician noticed that I wasn’t developing at the same rate as my peers. I was officially diagnosed with mosaic TS at the age of 12, in August of 2003. Although this was a shock to me and had a huge impact on my life, I never let it define me. I understood that I would have to find a different way to become a mother, once I became old enough. I took growth hormone injections for four years, from middle school until high school.

Two of the NVLD-related challenges I faced in school were time management and memory, which I learned to overcome by writing things down. I also had ADHD, some obsessive tendencies, and struggles with being independent (I still do not drive). Despite the challenges caused by NVLD, I am proud to say that I made the Dean’s List in high school, with some extra help (an Individualized Education Plan, or IEP; special education classes; and work with speech, occupational, and physical therapists). I also participated in an internship program for young adults with disabilities called Project SEARCH, at Children’s Hospital of Wisconsin. Through this internship and other opportunities, I learned how to advocate for myself and develop and maintain essential job skills.

My Adult Years

Seventeen years later, I have earned an Associate’s Degree in art and general studies from Cardinal Stritch University in the Milwaukee area. Having been an endocrinology patient inspired me to find a job in the healthcare setting. I now work for a company called Morrison at Northwestern Hospital in Lake Forest, Illinois, where I enjoy serving the healthcare community by washing dishes in the hospital’s cafeteria.

Overcoming Obstacles To Lead a Fulfilling Life

“What I would like other [individuals] with TS to take away from my experience would be to follow your dreams and never let a diagnosis get in the way.”

Maria, woman with TS

In addition to my work, am also a proud Special Olympics athlete and enjoy playing sports. What I would like other individuals with TS to take away from my experience would be to follow your dreams and never let a diagnosis get in the way. If it weren’t for the love and support of my family, I would not have overcome the obstacles I have faced throughout my life. 

Written by Maria, a woman with TS, and edited by Susan Herman, TSF volunteer blog post editor and translator.

For more information on living with Turner Syndrome, click here.
To read more My Story blog posts, click here.

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