Living with 22q11 between the ages 12 – 18


12 - 18 Years Old

Living with 22q11 between the ages of 12 – 18

People with 22q11 all have different skills and abilities and experience life in different ways.

For example, we know that it’s sometimes hard to tell other people that you have 22q11, and what it means. We also know that while school can be lots of fun, sometimes it’s difficult too, because some of us struggle with maths, English and remembering things.

While we make lots of friends at school, sometimes we meet bullies too, and it’s important to know what to do when that happens. Many of us suffer from anxiety, and there are tools we can use to help manage this as best we can. We know that keeping fit is important, as is making sure we eat a healthy diet, and getting out and about to see our friends regularly.

School can be stressful for everybody, and sometimes we might need extra help. There is support available to make learning a little easier, like extra tuition (grinds), special career guidance and in-class support (sometimes these are called SNAs).

As we get older, we might want to start dating, and there’s lots to think about there – if we’re ready, what kind of person we’d like to meet, and how to be safe when talking to people online.

The 22q11 Ireland community can help with all of these questions and challenges. We meet up regularly, and lots of us speak online, through email, instant messenger or Facebook. Sometimes we go to the zoo, or attend conferences or just get a coffee together. We also have the YEEP group, which helps us learn about 22q11 and share our experiences and research with our families, friends, doctors and teachers.

We learn from each other, and talk to each other and we know that we’re not alone.

If you live with 22q11 and would like to get in touch with other people like you, message us on our social media pages @22q11Ireland on facebook and twitter. We would be happy to hear from you.

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