My Story is Not Meant to be Inspirational

Turner syndrome can be difficult. Learn about Aleah’s challenges with ear infections, making friends, and learning with NVLD.

My story is not meant to be inspirational; it’s meant to help girls with Turner syndrome feel less alone.

Hi, my name is Aleah. I’m a 19-year-old girl with Turner Syndrome. I love baking, acting, and reading. 

 

I was born in a small city in Michigan called Battle Creek. I had three hospitalizations between 4-months-old and 6-months-old because of recurrent Mastoiditis (described below). When I was 9-months-old, doctors wanted to have me genetically tested because I had Mastoiditis and Lymphedema as an infant. 

That’s how we found out I have Turner Syndrome. 

The Importance of an Early Diagnosis

Through an early diagnosis, treatment and planning can start early on for the journey ahead. However, DNA testing is not mandatory within states, leaving many diagnoses to be delivered late. 

According to an article published by the National Center for Advancing Translational Science, “nearly nine of 10 experts on rare diseases agreed that sequencing healthy newborns’ DNA to reveal treatable genetic disorders should be available for all infants.” 

As parents, it is more than important to advocate for genetic testing for your baby. With Turner syndrome, it’s essential for girls to start growth hormone therapies and understand their related health conditions early on.

My Health Journey After Being Diagnosed

I had three hospitalizations when I was between 4- and 6-months-old because of recurrent Mastoiditis, which is a bacterial infection that can cause the mastoid bone behind the ear to degrade.

Unfortunately, mastoiditis is common among girls with Ts. Ear issues continued to be a theme during my childhood, requiring 12 ear tube surgeries. 

Learn more about Turner syndrome and ear health here.

Along with ears, there were other health treatments I had to make sure I kept in track of:

  • I have to take blood pressure medication.

  • At 13, I started wearing estrogen patches.

  • Up till 14, I had to take growth hormone shots.

  • And when I was 17, I got hearing aids because I’m hard of hearing with mild-moderate hearing loss. 

The Difficulties Most Don’t Know with Turner syndrome

Making friends was a struggle for many reasons related to Turner syndrome. I missed a lot of school because of doctor appointments, and many kids my age didn’t understand what I was going through. In middle school and high school, I felt isolated when girls in my class talked about getting their period when I hadn’t gotten mine. 

Additionally, many girls with Turner syndrome also have neurological symptoms as well. Nonverbal Learning Disability (NVLD) made it difficult for me to make friends. My parents noticed my lack of social and visual spatial skills by the time I was 3. 

Consequently, my mom enrolled me in the Early-on Program, and I had 504 plans in school. Additionally, throughout my childhood I was in occupational therapy for Sensory Processing Disorder. 

TSF offers information packets made to distribute to teachers to help students with NVLD.

Through increasing awareness of these symptoms and accommodations needed, we can help more girls. Read more about NVLD here and order a NVLD Teacher’s Guide here.

My Message to Parents and Girls with Turner syndrome

To Parents – It can be scary at first. My mom said she went through a grieving process when I was diagnosed. She said that when you have a daughter with medical complications, it takes time to process. 

Support your daughter as best as you can; learn more about Turner syndrome. 

To all my fellow Turner syndrome butterflies: be patient with yourself, you’re amazing. It can feel lonely sometimes, but know you’re not alone. 

My story is not meant to be inspirational; it’s meant to help girls with Turner syndrome feel less alone.

My Journey Ahead

Nowadays, I still struggle with making friends and can’t drive. However, I’m enjoying learning how to ride the bus. 

Reading and writing has always been an interest of mine. In fact, I hope to become a librarian to share my love of books. I also hope to act in more plays in the future and develop genuine friendships. 

Thank you to the Turner Syndrome Foundation for giving me the opportunity to share my story.

Like Aleah, there are many girls out there who are on this same path of facing the obstacles of Turner syndrome and paving their way ahead.  Your help makes all the difference in allowing these girls to have the information they need throughout their journey.

Consider making a donation today to help another butterfly through TSF’s mission of spreading awareness and information of Turner syndrome. Every amount counts.

External References:
National Center for Advancing Translational Sciences. (2023, May 9). Genetics Experts Support Adding Hundreds of Treatable Rare Diseases to Newborn Screening | National Center for Advancing Translational Sciences. Retrieved March 9, 2024, from https://ncats.nih.gov/news-events/news/genetics-experts-support-adding-hundreds-of-treatable-rare-diseases-to-newborn-screening

Editor’s Note: this post is republished due to the new website transition.

Written by Aleah. Edited and Designed by Riya Ajmera, TSF Blog Coordinator.

© Turner Syndrome Foundation, 2024


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