How to Live with Spina Bifida

Hello, my name is Donna Jones and I'm an adult living with spina bifida. The best advice I have for a person or family dealing with the challenges of spina bifida is to learn to become your own advocate. In my life, I have had numerous experiences where I've not felt confident in a doctor's initial diagnosis and I have sought a second opinion.

Often times, the second opinion has reaffirmed that my intuition was correct. My advice is to trust your instincts and learn to speak out particularly on matters involving your health. If you feel like something is wrong, it likely is.

Advocacy issues in health care are different at each age and stage of development. I would encourage everyone with spina bifida to consult with their local Spina Bifida Association Chapter or the spina bifida clinic coordinator to determine issues you should be mindful of. Two great resources I found are the Health Guide for Parents of Children Living with Spina Bifida and the Health Guide for Adults Living with Spina Bifida. Each book establishes what an appropriate level of care is for many different challenges facing those with spina bifida. Both resources are available on the Spina Bifida Association's website at spinabifidaassociation.org.

Finally, I would encourage each and every person touched by spina bifida to remember how far we've come in care and treatment over the last 40years and to realize that sky is the limit as to where we can go.


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