I Am One Out of 2,000

February 16, 2018

 

 

I am one out of 2,000.

 

Imagine having your first baby girl and some of the first words the doctor says are, "She probably has Turner syndrome.  She will be short and sterile, but intellectually, she should be fine."

 

Those are the words my family heard the day I was born. Little did they know that after much research, they would find out they had more questions than answers.  Turner syndrome affects each girl differently, some will go on to be doctors and others will never live alone.

 

Turner syndrome affects me, and many other girls, in the following ways:

 

  • Height – I’m short, even after nightly growth hormone injections for 11 years

  • Infertility - I have to take replacement hormones and I will have to build my family through adoption 

  • Heart issues- 4 different ones

  • Kidney - I only have one

  • Webbed neck- extra skin around the neck (I had 2 surgeries to fix that)

  • Lymphedema- swelling of hands and feet (what got me diagnosed)

  • Ears sticking out- (I had surgery to have them pinned back)

  • Hypothyroidism -  doesn’t work correctly

  • High blood pressure- when I was 14

  • Non-Verbal Learning Disorder- I struggle with some social cues

  • Hearing issues -I will need hearing aids in the future, I probably need them now but don’t want them.

 

My journey with TS has not been easy. It has been filled with tears, confusion, fear, anger, and disappointment. It has also made some tasks harder for me than my peers, like driving.

 

Also due to NVLD (Non-verbal Learning Differences or Disorder), we were unsure if I would be able to hold certain jobs. I took a leap of faith and got my first job at my local ACE Hardware store. My mom, just a few months after I started the job said, "I never thought you would make it as a cashier, but you are an excellent multi-tasker". I owe my success to my amazing ACE team. Their patience, kind words, and loving attitude did more for me than they will ever know.

 

While I know this TS journey is lifelong and there have been and will be more tough times, it is all worth it. I would not be the person I am today without it, and it has forced me to become a stronger, braver, and more determined person.

 

Finally, a huge 'Thank You' to my family, friends, teachers, TS sisters, co-workers, and everyone else for putting up with me, and never leaving my side on this journey.

 

Brooke is the daughter of Cindy Scurlock, President of the Turner Syndrome Society of the United States, for 11 years.  Brooke has been involved the TSSUS and Turner Syndrome communities her whole life, and is a Youth Program Leader Volunteer at the National TSSUS Conferences, after having been a participant for many years.  Brooke is in her sophomore year in college, where she is majoring in elementary education.  

 

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