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22q11.2 Deletion Syndrome: What It Is and How to Support Teens and Adults

Loving Life Support Services
19 hours ago
4 min read

22q11.2 deletion syndrome is one of the most common genetic conditions there is, yet many people have never heard of it. Families often first hear about it because of a heart problem or speech difficulty in childhood, but the parts that matter most in the teenage and adult years are often learning, anxiety and mental health.


This guide explains 22q11.2 deletion syndrome in plain language, what it can look like for teens and adults, what helps, how the NDIS fits in, and how we support people with 22q on the Gold Coast and Sunshine Coast.


What is 22q11.2 deletion syndrome?


22q11.2 deletion syndrome is a genetic condition caused by a small missing piece of chromosome 22. You might also hear it called DiGeorge syndrome or velocardiofacial syndrome, or just "22q". It's the most common chromosome deletion, affecting around 1 in 4,000 people.


In more than 90% of people it happens by chance and isn't inherited, although someone with 22q has a 50% chance of passing it on to each child. It's diagnosed with a specific genetic test, because a standard chromosome test can't pick it up.


What 22q can look like for teens and adults


22q affects people very differently, but some features are common.


Learning. Most people have some learning difficulty, usually in the borderline to mild intellectual disability range. Maths, abstract reasoning, reading comprehension and working memory tend to be harder, while rote memory and learning by doing are often strengths.


Social skills. Many people find social rules and friendships hard to navigate. Around 1 in 5 people with 22q are also autistic.


Anxiety and mental health. Anxiety and depression are common. People with 22q also have a much higher risk of psychosis, including schizophrenia. Around 1 in 4 to 1 in 5 develop it, which means most people don't. Psychosis is treatable, and getting help early makes a big difference.


Health. Heart conditions, low calcium levels (which can return in adulthood, especially during illness), hearing problems, thyroid problems and more frequent infections are all more common. Regular check-ups with doctors who know 22q are important.


What helps day to day

  • A predictable routine, which helps with anxiety and builds coping skills

  • Matching expectations to the person's abilities, and teaching by doing rather than just explaining

  • Keeping track of changes in mood, sleep, thinking or behaviour, and raising them with a doctor early, rather than writing them off as "just being a teenager"

  • Steering clear of alcohol and cannabis, which can affect calcium levels and may raise the risk of psychosis

  • Checking for medical causes, like low calcium or poor sleep, when behaviour changes

  • Gentle support to keep up with appointments and medication


Our posts on the role of routine in reducing anxiety and psychosocial disability have more on supporting mental health.


22q11.2 deletion syndrome and the NDIS


22q11.2 deletion syndrome (listed as DiGeorge syndrome, 22q11.2 deletion syndrome or velocardiofacial syndrome) is on the NDIS's List B, a list of conditions that are likely to result in a permanent impairment. That means the NDIS generally accepts it's lifelong, but you still need evidence of how it affects everyday life.


Depending on the person's plan and goals, NDIS funding may include core supports for daily living and community access, capacity building for independence and social skills, therapy such as psychology, speech pathology and occupational therapy, and support to find or keep a job.


How we support people with 22q


At Loving Life, we support teens and adults with 22q on the Gold Coast and Sunshine Coast. We focus on routine, confidence and real-world skills, and we keep an eye on wellbeing so families hear early if something seems different.


1:1 support. Our 1:1 NDIS support gives the person a consistent worker who gets to know them well. That might be community outings, getting to appointments, shopping, public transport or keeping a weekly routine on track.


Skill building. Through capacity building and daily living support, we work on practical skills by doing them, again and again, until they stick. If work is a goal, our Employment Assistance program can help.


Groups. A small, predictable group can be a great way to build friendships and social confidence, especially in the years after school when routines often fall away.


Gold Coast (from The Hub in Nerang and out in the community): Skill Space, our weekday day program for life skills; Social & Skills for boys and young men; Girl Squad for girls and young women aged 17 to 25; and Cook. Learn. Thrive., our cooking program in the Hub kitchen.


Sunshine Coast (from The Studio, Moffat Beach and out in the community): ThunderBolts for young adults, Fun Friday, the Craft Group, Ladies Lunch and our Men's Group.


Our groups are small and well supported, and food on group days is on us, so no one misses out. You can see what each group does on our Gold Coast groups and Sunshine Coast groups pages.


Where to find more information


The 22q Foundation Australia and New Zealand offers free membership and information for families, and Genetic Alliance Australia can help connect you with support. The International 22q11.2 Foundation has detailed guides on mental health and adult life.


📍 Based on the Gold Coast and Sunshine Coast



Information current as at 8 November 2026. This post is general information, not medical advice. If you're worried about someone's mental health, talk to their doctor, or call 000 in an emergency.


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