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General health information

Down syndrome

Down syndrome is a chromosomal variation present from birth, involving extra genetic material from chromosome 21. Development and health vary widely from person to person. With appropriate health checks, early support, inclusive education, a say in decisions and good access to care, people with Down syndrome can lead meaningful lives.

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  • Down syndrome is a chromosomal variation, not an illness that defines who someone is. Wording such as ‘person with Down syndrome’ is often appropriate; ask about the person's own preference.
  • Extra material from chromosome 21 affects development and increases the chance of certain medical conditions, but does not determine character, potential or quality of life.
  • Healthcare throughout life includes ordinary preventive care plus targeted checks for conditions that occur more often.
  • Early support with communication, movement and learning helps, but development is not a race. Goals are set with the person and family.
  • People with Down syndrome have a right to accessible information, bodily integrity, privacy, relationships, education, work and decision-making with appropriate support.

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Communication, hearing problems and intellectual disabilitiesGood care starts with communication the person can hear, see, understand and use. A hearing problem or intellectual disability does not mean someone cannot make their own choices. Ask for suitable support, extra time and understandable information, and involve someone close to them only with consent or when legally necessary.
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Caring for someone (informal care)Informal care is unpaid help for someone close to you who is ill, disabled or dependent. Good care requires attention not only to them but also to your own limits, health, rest and safety. Seek help early for overload, and call the appropriate care service if the person's medical condition worsens.
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Parents with mental health or addiction problemsGrowing up with a parent who has mental health or addiction problems can bring uncertainty, stress and extra responsibility. The child is not to blame and does not have to cure the parent; support from reliable adults can be protective.