Living with Trisomy X chromosome syndrome

Imagine a world where you do not appear to have a 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 a blessing to have such unique genetics, but I face many challenges. Here is my story:

My name is Kerry Ann. I am 33 years old. I was born and raised in New Jersey. 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.

Trisomy X chromosome syndrome and independence

Because I can’t go out in public by myself, I rely on family to take me to places in the community and assist me with daily 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 appear normal, but sadly, my Trisomy X chromosome syndrome interferes with everyday 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 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.

People seem puzzled yet curious because they have never heard of the syndrome. I would like to raise awareness of 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.

LeeMC2022

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