May is Williams Syndrome Awareness Month

Williams Syndrome is a rare and genetic developmental disorder affecting about 1 in 10,000 individuals. Williams Syndrome is present at birth and can affect anyone and affects men and women equally. Some of the medical problems that can arise from Williams Syndrome include cardiovascular issues and developmental/learning delays. People with Williams Syndrome are often very social, friendly, and endearing. Although it affects individuals for life, early childhood diagnosis can greatly improve outcomes for people with Williams Syndrome.

There is no standard course of action for individuals with Williams Syndrome, every individual’s journey is different and unique. 80% of children who have Williams Syndrome suffer from cardiovascular issues. Other common issues that are occur in people with Williams Syndrome are gastrointestinal and kidney troubles. Treatment for these problems is ongoing and very costly. Despite these challenges, those with Williams Syndrome often demonstrate resilience, warmth, and friendliness that can inspire those around them. With the right support and medical care, they can lead meaningful lives.

Learn more about Williams Syndrome by visiting: http://williams-syndrome.org

Kristen, OPARC’s Ambassador, was the first who reminded us that May is dedicated to raising awareness for Williams Syndrome. Kristen became part of the OPARC family in 2016 and has since been instrumental in various roles within the organization.

When questioned about her experience living with Williams Syndrome, Kristen distilled it to a single word: “Rollercoaster”. Among the physical challenges often faced by individuals with Williams Syndrome, Kristen grapples with cardiovascular issues. Kristen mentioned that there are times when she wishes she did not have to live with Williams Syndrome, but she is committed to not let the condition define her. Instead, she chooses to emphasize the various roles she fulfills in the lives of others: a co-worker, a cherished friend, a cousin, and an aunt. These roles bring meaning and purpose into her life.

Kristen is a lover of music, animals, and baking. She has a dream to establish her own bakery one day, intending to employ individuals with intellectual and developmental disabilities. She is determined to be mindful of her customers’ needs, planning to offer pastries that cater to a variety of lifestyle requirements, similar to the requirements some of her friends at OPARC have.

Kristen’s message about Williams Syndrome is a powerful one: she believes that individuals with the syndrome should be recognized and appreciated as complete individuals, not treated with bias or differentiated because of their condition.