My daughter has 22q11.2, she's historically been failed by clinicians, educational practitioners/institutions, social care and society in the wider context. Despite my concerns, late diagnosis at 4y6m, has impacted on her self esteem, language, social, emotional, mental health and life chances.
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Max Appeal is the UK charity that supports those affected. According to the All-Party Parliamentary Group, 22q11 could be the most common genetic disorder. 1 in 500 of the population has been reported, this would be 2x Down Syndrome, 6x Cystic Fibrosis. They found Mental health difficulties affect 93% of people with 22q11and it's the single most common cause of schizophrenia which affects 25% of people with 22q11. Delays in diagnosis has an adverse affect on the child, their family and it's also a hidden cost for the NHS, social services and welfare state.