Deletion 22q, also known as DiGeorge Syndrome and VCFS (Velo Cardio Facial Syndrome) is a topic that Amy Maiorano, a graduate of our College Experience Program, understands on a personal level. Amy describes herself as a typical 27-year-old with a “hidden disability” that makes her unique. Her life’s passion is to share about her disability and raise public awareness of Deletion 22q. 

Deletion 22q is the second most common chromosomal disorder after Down Syndrome, affecting 1 in every 4,000 live births. This disorder is caused when a small part of chromosome 22 is missing and results in the poor development of several body systems. Amy informs us that 22q can be hiding, creating a variety of underlying medical, psychiatric, and learning problems. This includes heart defects, visual and hearing problems, growth/development, social/emotional problems, and intellectual disabilities. There are over 80 characteristics associated with this syndrome, which makes it difficult to detect without DNA testing.

Amy has been actively educating people about her challenges and successes with Deletion 22q for many years. She was recently the guest speaker for a Zoom conference, has her own blog called Speaking Amy (click here to view), and even made a music video with the cooperation of her family and friends called “22q” which was sung the style of Taylor Swift’s “22”