May is Williams Syndrome awareness month. Williams syndrome is a rare genetic condition characterized by unique physical features, delays in cognitive development, and potential cardiovascular problems. Children born with Williams syndrome can have a normal life expectancy, but may develop side effects from the condition that can affect their prognosis.
What is Williams syndrome?
Williams syndrome, also known as Williams-Beuren syndrome, is a rare, neurodevelopmental, genetic condition characterized by many symptoms, including unique physical features, delayed development, cognitive challenges, and cardiovascular abnormalities. Williams syndrome may cause poor growth in childhood, and most adults with the condition are shorter than average. Williams syndrome can also cause endocrine concerns like having too much calcium in your blood and urine, an underactive thyroid, and early puberty.
Who does Williams syndrome affect?
Williams syndrome usually occurs when someone is missing a small piece of chromosome 7. This means that most people with Williams syndrome have not inherited the condition from a parent. People with Williams syndrome have a 50% chance of passing the condition on to their children.
How common is Williams syndrome?
Williams syndrome is a rare condition that occurs in an estimated 1 in every 10,000 births in the United States.
How does Williams syndrome affect my child?
As someone who has been diagnosed with Williams syndrome, I have been faced with many challenges. The challenges I have faced include having to undergo physical therapy and occupational therapy at a very young age to help with walking. I also would take pink medicine every time I went to the dentist because if my mouth bled, it would affect my heart. I also struggled with math and reading. Now, as an adult, I sometimes struggle with anxiety and depression. I feel lonely sometimes. I have difficulty reading social cues. Now, I will discuss where I am thriving. I have a fantastic job, I’m living my best life, and I graduated from Manhattanville, where I received my Bachelor’s degrees in Sociology and Early Childhood Education. I have inspired many people, exceeded many people’s expectations, and am now speaking with medical students about Williams syndrome.
As someone who has been diagnosed with Williams syndrome, I have been faced with many challenges. The challenges I have faced include having to undergo physical therapy and occupational therapy at a very young age to help with walking. I also would take pink medicine every time I went to the dentist because if my mouth bled, it would affect my heart. I also struggled with math and reading. Now, as an adult, I sometimes struggle with anxiety and depression. I feel lonely sometimes. I have difficulty reading social cues. Now, I will discuss where I am thriving. I have a fantastic job, I’m living my best life, and I graduated from Manhattanville, where I received my Bachelor’s degrees in Sociology and Early Childhood Education. I have inspired many people, exceeded the expectations of many, and am now speaking with medical students about Williams syndrome.
I will now talk about Yes She Can and its relation to the Williams syndrome community. The mission of Yes She Can is to help all individuals with all abilities, including people with autism and other learning differences, develop transferable job skills to enable them to join and be successful in the competitive workforce.
By YSC trainee Rachel
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