Coping with the diagnosis and explaining it

"Most children and adults with the 22q11.2 deletion do quite well both medically and as members of their families and communities at large. As with anything that is unexpected, coming to terms with the diagnosis is often difficult at first but becomes easier as more information becomes available and as families have an opportunity to meet other children and adults with the 22q11.2 deletion and/ or to converse with them through diagnosis specific internet sites. In addition, attendance at family meetings/picnics; contacting support networks; and sending children to camps specifically designed for those individuals with a 22q11.2 deletion such as Dragonfly Forest is often helpful as families realize they are not alone."

~ The 22q Family Foundation (Formerly the Dempster Family Foundation)

Explaining 22q11.2DS to the family member diagnosed with the syndrome

22q11NC (the North Carolina 22q11 Deletion Syndrome Support Group) has put together a book to explain what it is like to grow up with the syndrome. While it is geared towards younger people, it is a wonderful resource for explaining 22q11.2DS to an adult family member who has been diagnosed this syndrome.

The book is available online at http://www.22q11nc.org/book.

If you would like additional help in disclosing or explaining a diagnosis to a loved one, please call our clinic at (416) 340-5145 to arrange for an appointment.

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Explaining the diagnosis to others

Here are two resources for caregivers who need to explain 22q11.2DS (22q) to relatives and friends. These are also useful for health professionals who are unfamiliar with the syndrome.

  • Leaflet on 22q11.2DS and the Dalglish Clinic
    This is a one-sheet, two-sided leaflet that contains a quick introduction to both the syndrome and our clinic. To print 3 double-sided copies per letter-sized sheet, please use this version. If you are using a duplex printer, please select "Print on both sides of the paper" and "Flip on long edge".

  • A video called "My Child has 22q" made by The International 22q Foundation

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