Supporting individuals and families living with Williams syndrome across Western Australia.

Facebook
About Williams Syndrome

Understanding Williams Syndrome with care and clarity.

Learn about the health, development, learning and social characteristics associated with Williams Syndrome, along with the support that can help individuals and families thrive.

7
Genetic Cause Chromosome 7 deletion

Associated with a small deletion of genetic material.

1:10K
Estimated Occurrence Around 1 in 10,000 people

It occurs worldwide and can affect people of any gender.

WS
Individual Experience Every person is different

Strengths and support needs vary between individuals.

WSAWA community member
Community and individuality A diagnosis is only one part of a person's story.

A genetic condition that affects people in different ways.

Williams Syndrome is present from birth and may be associated with cardiovascular differences, developmental delays, learning difficulties, feeding or growth concerns and a distinctive social and communication profile.

Many people with Williams Syndrome are warm, expressive and highly social. They may also benefit from structured support in health, communication, learning, sensory regulation and everyday living.

Health Individual medical assessment and ongoing monitoring.
Development Personalised learning, therapy and practical support.
Community Connection, inclusion and family-to-family support.
Important: Williams Syndrome affects each person differently. Information and support should be tailored to the individual in partnership with qualified health, therapy and education professionals.

Characteristics that may be associated with Williams Syndrome.

A person may experience some, many or only a few of these features. Their severity and impact vary.

01

Characteristic Facial Appearance

Some people have recognisable facial characteristics. These features differ between individuals and may become more noticeable with age.

02

Heart and Blood Vessel Problems

Cardiovascular differences may include narrowing of blood vessels or other heart-related concerns requiring specialist assessment and monitoring.

03

Anaesthetic Concerns

Medical teams should be informed about the diagnosis before procedures because individual assessment and additional precautions may be required.

04

Hypercalcaemia

Some children may have elevated calcium levels, particularly during infancy or early childhood. Medical monitoring may be recommended.

05

Low Birth Weight / Slow Weight Gain

Some babies and children experience slower growth and may benefit from feeding, nutrition or developmental support.

06

Feeding Problems

Feeding difficulty, reflux, oral-motor challenges or selective eating may require support from relevant health professionals.

07

Irritability

Some infants and young children may experience irritability, disrupted sleep or difficulty settling.

08

Dental Abnormalities

Dental spacing, tooth shape or enamel differences may occur, making regular dental care important.

09

Kidney Abnormalities

Kidney or urinary concerns may occur and should be assessed and monitored by qualified professionals.

10

Hernias

Inguinal or umbilical hernias may occur more frequently and should be reviewed by a doctor.

11

Hyperacusis

Increased sensitivity to sounds can cause discomfort or anxiety and may benefit from practical sensory strategies.

12

Musculoskeletal Problems

Reduced muscle tone, joint stiffness, posture or movement challenges may benefit from physiotherapy and medical review.

13

Overly Friendly Personality

Many individuals are highly social and expressive, while also benefiting from guidance about boundaries and personal safety.

14

Developmental Delay and Learning Disabilities

Development can progress unevenly, with strengths in some areas and additional learning, attention or organisational needs in others.

15

Attention Deficit and Anxiety

Some individuals experience attention, concentration or anxiety-related challenges requiring individualised support.

Diagnosis

Confirming Williams Syndrome.

A clinician may suspect Williams Syndrome based on medical and developmental characteristics. The diagnosis is confirmed through genetic testing requested and interpreted by qualified professionals.

  • Clinical and developmental assessment
  • Genetic testing for the characteristic deletion
  • Cardiac, kidney, calcium and hearing evaluation
  • Genetic counselling for the individual and family
Treatment and Support

Individualised care across the lifespan.

There is no single treatment plan suitable for everyone. Care focuses on monitoring health, supporting development and learning and promoting independence and wellbeing.

  • Regular medical and specialist follow-up
  • Speech, occupational and physical therapy
  • Educational and behavioural support
  • Social skills and independent living support
Important Medical Information

Every person's healthcare needs are individual.

This page provides general information and does not replace advice from a doctor, geneticist, cardiologist, paediatrician, therapist or another qualified professional.

Contact WSAWA