My name is Emily Limbach and I have Turner syndrome. I was diagnosed before birth when my birth mother had an amniocentesis after the doctor noticed a cystic hygroma on the back of my neck.
When the diagnosis of TS was confirmed, my birthparents had difficulty accepting this information. I was born six weeks early and had some medical problems related to my prematurity. I was discharged from the hospital to my foster mother who also became my adoptive mother. She is a neonatal nurse practitioner, and was delighted to take me home and care for me with my TS. She also said I was very cute!
I took growth hormone for five years and am now almost 5'1" tall. I have a heart defect called "enlarged aortic root" and hypothyroidism. I take medication, but am very healthy and do not experience any problems from these medical issues.
As I continued to grow, my development was slower than most children. I didn’t talk until I was four years old. I attended special education during all of my school years and graduated high school in 2016. Last year, I attended Project SEARCH* at Milwaukee Children's Hospital.
I now work at a theatre in Mequon, WI. I have asked my doctor's if my learning difficulty is because of my TS or something else. Most women with TS don't have the level of learning disability I have. The doctors don't know if this is related to TS or perhaps other genetics, because my birth parents also had learning difficulties.
Despite my learning challenges, I’m doing very well and enjoy my new job. I’m also starting to look for an apartment, so I can have more independence and responsibility.
My mother and I have been to two TSSUS conferences and are looking forward to going again in 2018. I hope to see many of you there!
* Project SEARCH is a business-led program designed to develop social and employment skills for adults with disabilities at Children's Hospital of Wisconsin.
Turner Syndrome and the Heart
The Turner Syndrome Society of the United States 2018 National Conference