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.
