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22q11 Deletion Syndrome was only identified in the 1970s and while great advancements have been made in the care of people with 22q11, there is still much to learn. 22q11 Ireland works with medical, educational and research professionals to advance our understanding of the condition and its symptoms.
People living with 22q11 may experience challenges with their executive function, which can turn life’s daily tasks into hurdles. They may also have a speech and language delay, which can make communication frustrating. Abstract concepts such as maths can be difficult for those with 22q11, which has a trickle-down effect into day-to-day activities such as shopping or banking. Daily issues with time management and social cues mean that internet safety is a particularly critical area for families with 22q11.
More information on some of the symptoms experienced by those with 22q11 at different life stages can be found in our ‘Living with 22q11’ section.
However, many people with 22q11 are also highly sociable and proficient users of technology, eager, like everyone, to interact with their friends, family, and fellow pupils or colleagues. Our organisation seeks to help those with 22q11 to engage with their community, and live full and fruitful lives.
We recognise that the experts on 22q11 are those who deal with the syndrome every day: for example, the YEEP (Young Experts by Experience Panel) group is a pioneering initiative in which research is conducted with adults with 22q11, as opposed to on them. This group, led by independent mental health researcher Ms Lorna Kerin has broken new ground in the field of research, providing invaluable insight for professionals as well as a place of learning, social interaction and self-determination for those with 22q11.
On a day-to-day level, we collate academic research, highlight training opportunities and provide vital information for professionals in the field of social skills, which can be accessed through the below portal.