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Living with 22Q

22q11.2 Deletion Syndrome (DiGeorge Syndrome/VCFS) is a chromosomal abnormality that can cause a wide range of health and developmental issues, including heart defects, breathing issues, problems with the gastrointestinal tract, immune and endocrine systems, differences in the palate, slow growth, and autism and/or developmental delays or learning disabilities in some individuals. Children with this condition may have many or only a few of the symptoms, with varying severity. Physicians with expertise in this condition can quickly recognize the diagnosis in some patients and take steps to improve their quality of life, but in other children and adults it is not as straightforward.*





22q INFO

Get answers to some of the MOST FREQUENTLY ASKED QUESTIONS about 22q11.2 Deletion Syndrome.

  1. What is 22q11.2 Deletion?
  2. How Common is the 22q11.2 Deletion?
  3. Is 22q11.2 Deletion the same as DiGeorge syndrome?
  4. What tests are used to identify the deletion?
  5. Is the 22q11.2 deletion hereditary?
  6. What are the symptoms of 22q?
  7. What are the medical needs if diagnosed with 22q?
  8. How should individuals with the 22q11.2 deletion be followed medically?
  9. How do families cope?


Additional Resources

Includes general and educational information, specialty centers and services, websites, support groups, books, conferences and camps all designed to support children, adults and families affected by 22q11.2 Deletion Syndrome. Click here for more information.

22q News from 2011

Includes links to news on 22q sites that can provide a way for you to interact with others affected by 22q11.2 Deletion Syndrome, Facebook pages and information on medical research and hospitals. Click here


Faces of 22q. There are Many

We have met many children and adults living with 22q. We are grateful to the families who have come forward to share their story with us. We are inspired by the courage and optimism they show in facing their everyday challenges. You can read about these wonderful families or share your own story here.


*Information on this page and subsequent pages was reprinted with permission from Donna M. McDonald-McGinn, MS, CGC, The “22q and You” Center, The Children’s Hospital of Philadelphia.