Down Syndrome

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DOWN SYNDROME

Education

What is Down syndrome?

Down syndrome is a genetic condition and is also sometimes known as trisomy 21.  Down syndrome occurs at conception. People from all different backgrounds and ages have children with Down syndrome. Our bodies are made up of trillions of cells. In each cell there are tiny structures called chromosomes. The DNA in our chromosomes determines how we develop. Most people have 23 pairs of chromosomes in each of their cells (46 in total). People with Down syndrome have 47 chromosomes in their cells. They have an extra chromosome 21, which is why Down syndrome is also sometimes known as trisomy 21.

Every person with Down syndrome is an individual. Just like everyone else they will have different things they are good at and other things that they find harder. People with Down syndrome are capable of living full, happy lives as valued members of their communities.

People with Down syndrome may have:

  • areas of strengths and other areas where they need more support, just like everyone else in the community
  • some level of intellectual disability
  • some characteristic physical features
  • increased risk of some health conditions (many of which are treatable)
  • some developmental delays.

Down syndrome is a genetic condition, not an illness or disease. It is nobody’s fault. There is no cure and it does not go away.

“It is estimated that approximately 1 in every 1100 babies born in Australia will have Down syndrome. This means that each year there are approximately 290 new babies born each year who have Down syndrome.”
https://www.downsyndrome.org.au/about-down-syndrome/statistics/

The life expectancy of people with Down syndrome is increasing with a median age currently of 60 years. People born with Down syndrome go to school, study, get a job and get married. It’s important that they have the understanding and support of their communities so they can participate and be fully included in everyday life. 

Down syndrome and adulthood

Independent living

Some people with Down syndrome decide to live with family members, friends or support people, and other people decide to live on their own. There is no right decision about where to live, or who to live with and everyone is different. People with Down syndrome can be supported to think about the skills they have and any help they might need in their home and community. You can find tools and ideas in the Living Independently guide.

People with Down syndrome can find it harder to understand and communicate information for different reasons. This means people with Down syndrome sometimes need help to make decisions and understand the consequences (what could happen as a result of the decision). There are tools to help with supported decision making about important life choices. You can find out more in the Supported Decision Making guide.

Employment and productivity

People with Down syndrome want to work for the same reasons as everyone else – so that they can be independent, contribute to society, earn their own money, learn new skills, meet new people, and feel valued. People with Down syndrome should be supported to explore all their employment options and to participate in open employment wit the right supports.

There are a range of resources in the Employment Toolkit on the Down Syndrome Australia website.

The NDIS have a range of resources and information to help people with finding and maintaining employment. You can find out more about NDIS and employment on the NDIS employment webpage.

Job Access - www.jobaccess.gov.au

NDIS - https://www.ndis.gov.au/understanding/ndis-and-other-government- services/employment

Volunteering Australia - www.volunteeringaustralia.org

Health and wellbeing

Sustaining a healthy lifestyle by eating well, exercising regularly and having annual checks with medical professionals are the most important steps to maintaining physical wellbeing. Weight management is a common concern for adults with Down syndrome, so it is important for to have regular exercise and a healthy diet. Adults also require regular health check ups along with looking after their mental health.

There are a range of medical conditions that may occur more commonly in adults with Down syndrome. Certainly not all of these will occur in each individual but it is good to know what may occur. It is recommended that a diary or journal of all doctor and allied health appointments, tests, scans and test results are kept together by the individual as well as by the GP.

Access to appropriate care within hospitals and the general health system can be difficult for people with Down syndrome. It is essential to ensure that they have access to good quality health care and are supported to find information and make informed health decisions. You can find more information about Down syndrome and health in the Community Inclusion Health Toolkit.

Mental health

People with intellectual disability, including Down syndrome, are two to three times more likely to experience mental illness than people without disability. People with Down syndrome may also find it harder to access support due to barriers within the health system such as difficulty finding appropriate doctors or therapists

You can find more information in Down syndrome and mental health

Sexuality and reproductive health

At least half of all women with Down syndrome are able to have a baby. Between 35 and 50% of children born to mothers with Down syndrome are likely to have trisomy 21 or other developmental disabilities.

In general, men with Down syndrome have a lower overall fertility rate than that of other men of comparable ages. Regardless of this, contraception should always be used for protection against sexually transmitted infections and pregnancy, unless a couple has decided upon parenthood.

Men and women with Down syndrome have the same susceptibility to sexually transmitted infections as the rest of the population. Use of condoms during sexual intercourse is the best-known form of protection against sexually transmitted infections. Sexual education should include information on sexually transmitted diseases and how to reduce the risk of transmitting them.

The person with Down syndrome needs to be involved in any decision making about contraception. The method chosen will depend on personal preference, ability to use the contraceptive effectively and possible side effects. General practitioners are able to provide advice on the range of contraceptive options available and make a recommendation.

Evidence shows that people with an intellectual disability are at a higher risk of sexual abuse. It is important for all people with Down syndrome to have an awareness of personal safety, be able to protect themselves and report any concerns they have about how other people are treating them.

Down syndrome and ageing

In Australia people with Down syndrome have an average life expectancy of 60 years of age, and more than one in ten adults with Down syndrome will live to 70 years. Planning for the future allows the person with Down syndrome to grow old with dignity, love and care. It also helps to reduce the many stressors ageing can bring to them and their carers, families, medical professionals, therapists, work colleagues and friends.

People with Down syndrome are more likely to develop dementia than other people in the population. There is a detailed resource on Down syndrome and Dementia on the Down Syndrome Australia website.

Learning as much as you can about Down syndrome can help with easing anxiety and can guide you in making informed choices. Meeting other parents that have adult children with Down Syndrome or joining an online support group can also help.

Questions to ask your healthcare team

  • How often does an adult with Down syndrome require check-ups?
  • Which healthcare professionals do they need to see?
  • What are the best birth control options for my son or daughter?
  • What are the onset signs for Dementia?

Useful links:

https://www.downsyndrome.org.au/resources/toolkits/health-toolkit/

https://www.downsyndrome.org.au/resources/toolkits/employment-toolkit/

https://www.downsyndrome.org.au/wp-content/uploads/2020/02/DSAMentalhealthresourceweb.pdf

https://www.downsyndrome.org.au/wp-content/uploads/2020/04/DSA_Ageing_Resource.pdf

https://www.downsyndrome.org.au/wp-content/uploads/2020/02/DSA-DA-guide-for-families.pdf

Special thanks to Down Syndrome Australia for content sharing and links


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Disclaimer: This publication by Miracle Babies Foundation is intended solely for general education and assistance and it is it is not medical advice or a healthcare recommendation. It should not be used for the purpose of medical diagnosis or treatment for any individual condition. This publication has been developed by our Parent Advisory Team (all who are parents of premature and sick babies) and has been reviewed and approved by a Clinical Advisory Team. This publication is not a substitute for professional medical advice. Miracle Babies Foundation recommends that professional medical advice and services be sought out from a qualified healthcare provider familiar with your personal circumstances.To the extent permitted by law, Miracle Babies Foundation excludes and disclaims any liability of any kind (directly or indirectly arising) to any reader of this publication who acts or does not act in reliance wholly or partly on the content of this general publication. If you would like to provide any feedback on the information please email [email protected].