Fragile X Syndrome

Are You A Carrier?

You’ve probably heard of autism, Down syndrome, and Fetal Alcohol Spectrum Disorder. These are some of the most common intellectual disorders.  There is another disorder as common as these that you have probably never heard of:  Fragile X.

About Fragile X

Fragile X syndrome affects both genders, but is more prevalent among males. The genetic condition is not fatal, but there are major health concerns associated with it. Fragile X causes intellectual disability, various physical characteristics along with behavioral and learning challenges. Males tend to exhibit physical features like large ears, a long face and soft skin. This syndrome can also showcase behavioral characteristics such as ADD, ADHD, autism and autistic behaviors. those diagnosed with Fragile X can be overloaded by sensory and auditory stimulation, leading to increased risk of aggression. Females with Fragile X have the same characteristics but usually less severe.  

Experiences with Fragile X

I met Dillon when he was only 15 years old. I quickly noticed there was something different about him.  He wore the same faded jeans everyday and the same t-shirts on rotation: WW Smackdown, The Beatles, and one striped shirt with little holes in it. Dillon loved movies and quoted them all day. Whenever a movie was on his mouth fell open and he became totally absorbed in it. 

          

Dillon was the first student who ever hit me. At the end of one day all the students were packing up and making a lot of noise I noticed his hands were in tight fists. Before I could react, he punched my arm hard and quick. After a few minutes, the shock worn off, I talked with him and noticed his mood had changed and there were tears falling down his dirty cheeks.

Dillon had Fragile X.  Every time he was over-stimulated by sound or movement, he became overwhelmed and would lash out. When he calmed he was aware of his actions and appeared humiliated.

Dillon often seemed scared and confused, and I’m pretty sure his parents were too. There were no resources to help them understand and help with Dillon's condition.  Dillon’s inability to properly express himself led to physical aggression, and he was ultimately transferred to a new school for students with violent behavior. I believe if he had been able to gain access to services that met his needs, he could have soared.

Kids like Dillon deserve a better quality of life and to be treated with care and kindness. Fragile X affects more people than you think and there needs to be better resources for families affected.

Statistics, 

-          Approximately 1 in 3,600 to 4,000  males are affected

-          Approximately 1 in 4,000 to 6,000 females are affected

-          Approximately 1 million Americans carry the Fragile X mutation

-          Approximately 1 in 468 men are carriers of the Fragile X premutation.

-          Approximately 1 in 151 women are carriers of the Fragile X premutation.

      Obtained from: https://fragilex.org/fragile-x-associated-disorders/fragile-x-syndrome/

      Are you a carrier?