28 Jul Exercise for People with Fragile X Syndrome

Fragile X syndrome is a genetic disorder that affects approximately 1 in 3,600 boys and between 1 in 4,000 to 6,000 girls. It is the most common inherited cause of intellectual disability. Fragile X syndrome is caused by a change in a gene on the X chromosome, which disrupts the production of proteins in the nervous system.

People with Fragile X syndrome may experience a range of developmental, physical, emotional and behavioural difficulties. Along with a level of intellectual disability, some of the most common effects include:

• developmental delay, including difficulties with gross and fine motor skills
• attention deficit hyperactivity disorder
• autism spectrum disorders (ASD) and autistic-like behaviours (such as hand flapping and difficulty with social interactions)
• sleeping problems
• sensory processing issues, such as aversion to loud noises, bright lights and touch
• coordination problems
• low muscle tone, loose joints and flat feet
• vision and hearing problems
• large testicles (in post-pubescent males)
• heart problems.

The severity of these issues varies widely from one individual to another, and not everyone with Fragile X syndrome will experience all these characteristics.

There is currently no cure for Fragile X syndrome, but there are treatments and strategies that support people with the condition to achieve their potential and lead healthy lives.  Support from Accredited Exercise Physiologists, for example, can help with coordination, muscle strength and movement control.

WHY IS EXERCISE IMPORTANT FOR PEOPLE WITH FRAGILE X SYNDROME?

Regular physical activity is vital for good physical and mental health. For people with Fragile X syndrome, exercise can also assist with achieving better physical function, independence, and ability to perform everyday activities – and therefore quality of life.

For example, the right type of exercise can support improved:

• mobility and transfers
• muscle tone, strength and stamina
• cardiovascular function and endurance
• coordination and balance
• confidence and motivation
• social skills.

PHYSICAL ACTIVITY, BRAIN HEALTH AND BEHAVIOUR

In addition to the physical benefits, recent studies have indicated that exercise can support enhanced brain health and behaviour in people with Fragile X syndrome. For example, a review published in 2015 looked at studies exploring the link between physical exercise and autistic behavior in individuals with the condition. The authors concluded that exercise promotes growth of new brain cells and production of neurotrophic factors (molecules that support nerve cell growth and health).

They also note that exercise enhances memory and cognitive function. Exercise involving both physical and mental activities has been shown to improve cognitive ability in individuals with ASD, and participation in these activities has been shown to reduce stereotyping of these individuals. Aerobic exercise has also been linked with improved academic function in children with ASD.

WHAT TYPE OF EXERCISE IS BEST?

Individuals with Fragile X syndrome will benefit from different exercise types that address different aspects of function and health. An Accredited Exercise Physiologist with experience supporting people with intellectual disability can create an individualised program designed to suit each person’s needs and goals.

AEROBIC EXERCISE

Aerobic exercises such as cycling, walking, boxing, rowing, swimming and dancing support healthy function of the heart, lungs and circulatory system. Aerobic activity also enhances sleep and causes release of the ‘feel good’ hormones that boost mood.

STRENGTH/RESISTANCE TRAINING

Low muscle tone and loose joints are common in people with Fragile X syndrome. This can lead to general weakness, poor coordination and difficulty with fine and gross motor skills. Resistance exercises using body weight, bands, dumbbells or similar help build muscle strength and stamina and support bone health.

GAIT, BALANCE AND COORDINATION TRAINING

Specific exercises might also be used to train a better gait (walking pattern) and improve balance and coordination.

TRAINING SUPPORT PEOPLE

Individuals with Fragile X syndrome often need continued support to make positive health choices. Building the capacity of support people helps make sure individuals with the condition receive the assistance they need to engage in regular physical activity.

GUIDANCE FROM AN ACCREDITED EXERCISE PHYSIOLOGIST

The effects of Fragile X syndrome can make it difficult for people affected by it to achieve adequate physical activity levels. Sensory processing problems, for example, may make it challenging to exercise in bright or noisy environments, such as gyms.

Other issues, such as low muscle tone, loose joints and heart problems, mean certain exercises may be unsuitable. Children with Fragile X syndrome may have trouble maintaining concentration, so exercise sessions need to be challenging and enjoyable to maintain engagement.

Individuals with Fragile X syndrome have diverse and often complex needs. Getting guidance from an Accredited Exercise Physiologist, ideally one with experience working with individuals with intellectual disability, can ensure exercise is tailored to each person’s strengths, challenges and health issues.

Furthermore, recent research has shown that only one in four children and young adults with Fragile X syndrome meet recommended minimum physical activity guidelines. This research was conducted in the United Sates, but figures are likely to be similar in Australia. This highlights the importance of getting assistance if needed so individuals with Fragile X syndrome can achieve adequate physical activity levels.

Click here to find an accredited exercise physiologist near you.

Written by Amanda Semaan and Kara Foscholo. Amanda and Kara are Accredited Exercise Physiologists and Co-Directors of Active Ability, whose mission is to support people with disability to achieve optimal independence, health and quality of life.