Williams syndrome is a rare genetic disorder that most people know nothing about. That’s because Williams syndrome has only been on the medical radar for about 50 years. And experts are still trying to figure it out, with ongoing research led by organizations such as the Williams Syndrome Association.
According to the Williams Syndrome Association (WSA), Williams syndrome is caused by the spontaneous deletion of 26-28 genes on chromosome #7 at the time of conception. In most families, the child with Williams syndrome is the only one to have the condition in his/her entire extended family. Williams syndrome affects about 1-in-10,000 people worldwide and an estimated 20,000 to 30,000 people in the United States.
Medical and developmental problems, including cardiovascular disease and learning disabilities, typically occur – but side-by-side with striking abilities. These include advanced verbal skills, highly sociable personalities and an affinity for music.
Need for an Awareness Month
Among other health observances, May is Williams Syndrome Awareness Month, but awareness advocates attempt to raise awareness of Williams syndrome every day of the year. It’s only through awareness that they can attract the research interest and funding support that’s needed to answer the myriad of unanswered questions revolving around the syndrome.
During the month of May, volunteers across the country help the WSA by hosting various events designed to promote awareness of Williams syndrome, like picnics, fundraisers, educational events, walks and more.
A Mother’s Tale
In her recently-released book, Another Day, Another Challenge: the Biography of a Child with Williams Syndrome, author Marjorie Strebe gives a first-hand account of her daughter, Michelle, as she shares some of the heart-warming moments and many of the challenging experiences of raising a child with Williams syndrome.
“Friendly to a fault, these children know no strangers,” said Strebe. “They’ll hug anyone, anywhere. They’ll go with anyone, which can be a blessing if they’re meeting a family member for the first time. But it’s a dreaded nightmare at the grocery store or around the neighborhood. They have no concept of dangerous situations or people.”
An Air Force veteran herself, Strebe grew up in a military family and married an Air Force Tech Sergeant. Their daughter, Michelle, is the youngest of three children and their only child with special needs.
Click here to read more stories about families impacted by Williams syndrome.
- Access the information you need through online resources.
- Help further research by donating to the cause.
- Volunteer to support local efforts!
Has your family been impacted by a rare disorder? Share with AmeriDisability!