spina bifida information sheet

Adults Living with Spina Bifida

As care for persons with spina bifida improves they are living longer and many have been able to lead long, productive lives. When they are young, parents and other health providers have been the focus of their existence but as they grow into adulthood it is important they begin the transition into their role of adults.

Understand that their parents are not going to be around forever so it is important they begin this transition period as soon as possible. They will need to learn how to take care of their own personal health needs and well as what it will be like to have the responsibility of having a job. Often they can work with a personal care provider to get them on the right track but will need to learn to take personal responsibility.

Chances are they will be unable to drive and will need to learn to find their own means of transportation for both personal needs as well as going to work. The need for healthy friendships will also need to be understood to prevent them from falling in with those who do not have their best interests in mind. They likely will end up living on their own so they will need to learn responsibility in many aspects of their life.

As those with spina bifida grow into adults there is much they are capable of on their own including finding a doctor with whom they feel comfortable that also knows how to care for adults with the disorder. When the time comes they are no longer covered under their parents’ health insurance they will need to find their own coverage. They will also be responsible for keeping doctor appointments and keeping track of their medication needs and how to get emergency help when needed.

An important part of maintaining their health is physical activity and they will have to have the drive to keep up on their activities. Whether they walk through their own neighborhoods or wheel through in their wheelchairs, it is something they need to do to remain active. Signing up with the local swim club is an excellent way to remain active or joining a gym where they can lift weights or participate in activities for people with disabilities.

One aspect of life for adults with spina bifida is their sex life. They need to be able to talk to their health care providers about any dysfunctions they experience. Those with spina bifida often suffer nerve damage that affect their functions, yet still need to understand the premise of contraception and how their reproductive system works.