I strive for excellence within myself, not to meet others' expectations

By Kerry Ann, Triple X syndrome, United States, November 4, 2019

Life with a rare condition

Imagine a world where you do not appear to have learning disability. I have a rare chromosome syndrome that few people have heard of: Trisomy X chromosome syndrome, also called Triple X syndrome or 47,XXX. It may appear to be like a blessing to have such unique genetics, but I face many challenges.

Here is my story

"I strive for excellence within myself as I cannot meet society's standards of a person who appears normal."
My name is Kerry Ann. I am 33 years old. I was born and raised in New Jersey.

My educational difficulties and achievements

I attended a special needs school and, while the teachers tried their best to help me learn and excel, I still have issues with recollection and short-term memory loss. After I graduated from school, I worked very hard to teach myself how to read and write. In the past, I attended the 'Vocational Rehabilitation Service' where I received a full evaluation, including a year's worth of job sampling, numerous other tests, and a full assessment of my IQ. I was found to be unemployable. The Vocational Rehabilitation Service eventually closed my case and a wonderful hospital offered me some volunteer work.

I still struggle with my learning disabilities which include dyslexia. I have difficulties in reading, writing, comprehension, mathematics, telling the time, and short term-memory loss. Because of this, academia is really tough for me.

"It’s frustrating and emotional at times because I feel like I don’t fit in"

Because I can't go out in public by myself, I rely on family to take me out to places in the community and assist me with every day activities. I told my Mom that I would love to gain more independence and have a social life; she says that girls with Trisomy X chromosome syndrome are very attractive, sweet, kind, and innocent.

Socially I am high functioning, and I tend to be very trusting and friendly. I come across personable, happy, and positive. My appearance and etiquette appears normal, but sadly my Trisomy X chromosome syndrome interferes with every day living and holds me back. I am realising the number of tasks I cannot do in real life. It’s frustrating and emotional at times because I feel like I don’t fit in, no matter how hard I try. I strive for excellence within myself as I cannot meet society's standards of a person who appears normal.

Some people do ask me ask questions about Trisomy X chromosome syndrome and my learning disabilities. I am worried about my future as my Dad (my best friend) died last year, and my mom has incurable cancer. I have one sister who works in the nursing profession.

Raising awareness

People seem puzzled yet curious because they have never heard of the syndrome. I would like to bring awareness to Trisomy X chromosome syndrome as it’s one of the forgotten syndromes.

I would love to share my story with the world: educating, speaking, and answering questions about this unique and invisible syndrome, which few people understand.
 

Share this

Share your photos, videos and your experiences!

Be part of Rare Disease Day by sharing your story with others and sending a message of solidarity! You can write about your story and also submit photos or a video testimonial.
X

Share your story




(To find the english name and more information about your disease, click here). Start typing the English name of your disease. Please choose from the suggestions that appear. If your disease is undiagnosed please write ‘undiagnosed’, or if you would like to list multiple diseases, please type in a list separated by commas.