When is Williams Syndrome Awareness Month?
May is officially Williams Syndrome Awareness Month. Williams syndrome (also known as Williams-Beuren syndrome) is a rare genetic condition that affects 1 in 20,000 people. It takes its name from Dr. John Cyprian Phipps Williams, a cardiologist who first diagnosed the condition. Dr. Williams noticed a pattern in some of his young cardiovascular patients. Their facial features seemed similar and they were more outgoing and friendly than most.
Although Williams syndrome is a chromosomal condition, it differs from other chromosomal conditions such as Down syndrome or Fragile X. It occurs when there is a deletion (missing section) on chromosome 7. The location of the deletion is on the long arm of chromosome 7. This chromosomal region has been appointed as the “Williams-Beuren Syndrome chromosome region 1” or WBSCR1.
How does it affect people?
Just like any intellectual or developmental disability, the clinical presentation of Williams syndrome varies widely between individuals, and is influenced by many factors. Some people may have severe intellectual disabilities while others have mild intellectual disabilities.
People with this condition often have difficulty with tasks such as putting together puzzles and drawing. They tend to excel at tasks involving spoken language, music, and learning by repetition.
Characteristics
People with Williams syndrome tend to be born with distinctive facial features, such as a smaller head, flatter nose bridge, broad forehead, fuller eyelids, wide mouth, and widely spaced teeth.
One incredible aspect of Williams syndrome is that it tends to give people a positive outlook on life. You will often find a person who has Williams syndrome to be smiling, laughing, and being very friendly. That's not to say that people with William's syndrome are extra happy all the time. Everyone has their ups and downs.
Another characteristic of Williams syndrome is a deep sense of empathy for others, much more so than those without Williams syndrome tend to feel even at their most empathetic. For many, it's almost as if they can fully feel the other person's feelings.
Williams Syndrome Awareness Month
Each year, May is celebrated as Williams Syndrome Awareness Month. The occasion is to help raise awareness about the condition to promote inclusivity. Williams Syndrome Awareness Month also aims to raise funds for ongoing research.
The month is an opportunity to educate people about Williams syndrome. It's also a time for families of children with Williams syndrome to come together (online at the moment) and celebrate their unique traits and talents.