Down syndrome is associated with increased rates of a range of medical conditions, however it is extremely important to highlight that not all people with Down syndrome will face all (or in many cases any) of the associated conditions. Most people with Down syndrome lead healthy lives. It is also important to note that none of the associated medical conditions are exclusive to people with Down syndrome. That is, they are all health issues that can affect the general population as well.
When a baby with Down syndrome is born, some additional health checks are usually done including a cardiac evaluation and a blood test to check thyroid function. The incidence of congenital heart defects in babies with Down syndrome is up to 50% so this early check is very important. Not all babies with a congenital heart defect will require treatment and for those who do the prognosis is generally quite promising with early detection often being the key. Throughout life it is recommended that people with Down syndrome have regular screening for thyroid function, vision and hearing difficulties, and a range of other associated medical conditions. Information about recommended health screening for people with Down syndrome from birth through to 21 years has been produced by the Royal Children’s Hospital and is available in the Useful Downloads and Links below.
In addition to medical conditions, it is important to consider the impact of lifestyle factors on health, particularly as people with Down syndrome move into their adult years. Staying fit and active by participating in sport or other recreational activities coupled with a healthy, balanced diet will enhance wellbeing. Education around making healthy choices and staying active should start in the early years to ensure a well-developed understanding.
Finding a doctor to build a relationship with is an important part of staying healthy. There are no ‘Down syndrome specialists’, however all GP’s and paediatricians are equipped with the medical knowledge to provide people with Down syndrome with quality medical care. While some people like to enquire about their experience working with people with Down syndrome, we would suggest that the biggest indicators of whether they are a good fit are:
- Personality - do they ‘click’ with the person with Down syndrome
- Attitude - do they speak to and about the person with Down syndrome with respect
- A willingness to learn - they may not know everything about Down syndrome immediately but are they willing to research and investigate
By finding a doctor you are comfortable with and have confidence in, staying on top on the scheduled health screenings and encouraging good food choices and an active lifestyle we can ensure that people with Down syndrome are living their healthiest lives possible.
Useful Downloads and Links
- Screening for Children with Down syndrome - Royal Children's Hospital Melbourne
A routine health screening schedule for children with Down syndrome (prenatal to 21 years)
- HeartKids Queensland
Support for families who have a child with heart disease
- Coeliac Disease
An introductory article that looks at the diagnosis and management of Coeliac disease
- Cervical Spine Disorders: Craniovertebral Instability
Guidelines developed by the Down Syndrome Medical Interest Group (UK) regarding monitoring of the cervical spine
Further Information and Support
For further information and support please contact the team at DSAQ on (07) 3356 6655 or at [email protected]