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Physical activity will help maintain:

• fitness, balance and co-ordination
• flexibility
• muscle strength and posture
• healthy weight
• wellbeing
• bowel movements
• social participation and peer interaction

Try to engage in daily physical activity. Choose activities that you enjoy. For advice, speak with your physiotherapist. 

Contact sports such as football, activities that involve extreme extension of the back and neck such as gymnastics, and lifting heavy weights should be avoided.

The physical activity page has more information.

Adolescents living with spina bifida need to monitor their overall health to prevent complications, minimise hospital admissions, and maintain their independence.

Key things to monitor include:

• mobility
• pressure injuries
• weight gain
• kidney problems: some adolescents living with spina bifida have trouble maintaining their continence, which can lead to serious health issues such as renal failure.
• shunt problems
• worsening spasms or loss of strength in legs or arms
• skin, particularly your feet and bottom daily.
• regular breast checks, pap smears and gynaecological reviews (for women)
• prostate checks (for men)

Regular clinic visits are important to maintain overall health. For young people living with Spina Bifida, it is essential to have good routines. This will set the young person up for a lifetime of looking after themselves.

Socialising helps to build self-esteem, confidence and personal relationships. Try to find social activities you enjoy.

Finding a job can be a scary task for anyone. guidance and support are available to help you. A good place to start is the local Centrelink office.

Driving will help with your independence and job options. Cars can be changed to suit the needs of young people with spina bifida.

• More information about learning to drive and changes that can be made to cars can be found through the NSW Government page “Driving or riding with a disabilityâ€�. You can also use specialist driving centres.
• Your occupational therapist will be able to help you further.
• can also be useful.

Adolescents will transition to an adult spina bifida service.  Going to an adult spina bifida clinic gives young people a chance to talk about issues with their health.

Attending the spina bifida clinic is an opportunity to have:

• regular medical check-ups
• ongoing advice about continence management
• education about prevention/management of pressure injuries and lymphedema
• review of mobility needs, such as wheelchair prescription, orthoses and footwear
• review of pain management
• discussions about relationships, family planning and fertility
• discussions about social and recreation activities
• referrals and liaison to other services

If adolescents decide not to attend an adult spina bifida service, they can visit their local doctor regularly

The SBART provides clinical consultations, education, support and preventative health strategies to adults with spina bifida. The SBART consists of a Clinical Nurse Consultant and a Senior Occupational Therapist, providing a range of free services to adults who have spina bifida and are living in NSW.

These services include:

• Assisting young people to make to move from paediatric to adult services.
• Orienting young people to their new adult health service.
• Assisting with medical concerns as well as providing education and support to adults with spina bifida.
• Linking adults to appropriate health services as required.
• Promoting health lifestyles for adults with spina bifida.
• Attending adult spina bifida clinics across NSW.
• Providing spina bifida education to community services.

SBART is funded by the NSW Department of Health and hosted by Northcott, meaning that it is not NDIS-funded and open to anyone with spina bifida.

Referrals are taken directly by SBART. Adults with spina bifida can refer themselves or any health or community service they are working with can make the referral with their permission. 

Useful resources that can help during transition:

Some adolescents with spina bifida may not be ready for information about sex or want to openly discuss relationships/sexuality. It is important to ask questions to get the information when you are ready.

Adolescents with spina bifida may experience additional challenges including:

• how to manage the bladder and bowel during sexual activity
• for men: getting/maintaining erections
• lack of knowledge about sexual activity
• confidence and self-esteem
• lack of independence from parents or caregivers. 

Continence 

Managing the bladder and bowel is important for sexual function and good hygiene. Maintaining good continence for sexual function includes:

• emptying your bladder and bowel before sex
• having an open discussion with your partner about your concerns. This will help you feel prepared in the case of an accident.

Positioning

Sexual positions that suit your individual needs should be explored. Take care with:

• stomas and catheters
• lower limbs
• skin with decreased sensation.

There are aides that may assist with positioning for satisfaction. You can also discuss a stretching program with your physiotherapist to improve flexibility.

Fertility 

Spina bifida does not impact a woman’s ability to fall pregnant. Protection should be used to avoid unplanned pregnancies and sexually transmitted diseases.

Some men with spina bifida can produce children without any medical help. Others may require assistance to father children, depending on their ability to ejaculate. This can be explored in more detail with your doctor and a referral to a fertility clinic as required.