Spina Bifida in Adults – Coping Techniques for Adults
Due to advancements in the type of medical care available to individuals who have been diagnosed with spina bifida, a higher percentage than ever before live to see adulthood, and often live well into their adult life. As a result, there are new factors to take into consideration regarding the best way to treat this disease in adults. To begin with, it’s helpful to learn a little bit about the disorder and how it changes with age.
Health Care Issues
There are a number of health care issues that are unique to adults with spina bifida. Although most with severe forms of spina bifida will have already undergone corrective surgery and had shunts put in place to treat symptoms such as hydrocephalus, ongoing maintenance and care are required for optimal health. The following are some of these health issues to think about in adulthood.
- Obesity – Already a major epidemic among adults, those with spina bifida are even more at risk for obesity and its related health problems. Because many are confined to wheelchairs as adults or cannot walk without crutches, a decreased level of mobility makes it more difficult to burn calories and maintain a healthy weight. Attention should be paid to diet in adulthood to prevent diseases such as diabetes, hypertension, and sleep apnea.
- Shunt Failure – Over time, a well-placed shunt may fail. Some symptoms of shunt failure in adults with spina bifida include difficulty concentrating, memory loss, and finding a difficulty with words.
- Spinal Cord Tethering – If there are any sudden changes in bowel movements or orthopedic changes, this could be a sign of the spinal cord becoming loose. This can occur at any age, but it is often an issue related to spina bifida in adults.
- Orthopedic Issues – Arthritis and scoliosis can develop in adults who have been using crutches or braces for years, which is hard on the joints. A program of physical therapy and new fittings of any braces should be conducted on a regular basis, as part of an ongoing care program.
- Allergy to Latex – This is an issue that affects children as well as adults with spina bifida. For unknown reasons, spina bifida appears to cause an allergy to latex. When in hospital settings, patients must be sure to request a latex-free operating environment.
- Pregnancy – A woman’s fertility is not affected by spina bifida, and it’s possible for women suffering from this condition to become pregnant and have a baby at full term. There is some anecdotal evidence, however, that women may lose mobility in their lower limbs after having a baby, so it is important to work closely with a healthcare team should pregnancy occur.
Outreach Programs and Resources
There are many different resources available to adults with spina bifida. Joining a support group can be helpful for those who want to make connections with others who are going through the same thing. Other resources are available through government agencies, to help with issues such as employment, housing, and government financial assistance. Nonprofit agencies can be a good place to turn when looking for scholarships and grants that have been allotted to adults diagnosed with spina bifida.
The Spina Bifida Association has chapters in every state, and can be a good place to start looking for more information about local resources, support groups, and employment opportunities as an adult. The Social Security Administration also has information for any adults with disabilities, which can be a helpful resource.