Advice for People Living With Spina Bifida
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Living with Spina Bifida
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Advice for People Living With Spina Bifida
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Donna Jones
The Spina Bifida Association
The mission of the Spina Bifida Association ® (SBA) is to promote the prevention of Spina Bifida and to enhance the lives of all affected. Since 1973, SBA has been the only national voluntary health agency dedicated to preventing Spina Bifida in future generations and improving the lives of those affected by Spina Bifida through education, advocacy, research, and service.
SBA has a presence in more than 125 communities nationwide and touches thousands of people each year. Lives are changed by the programs SBA has created, the services the organization provides, and the gains achieved through its advocacy efforts.
Advice for People Living With Spina Bifida
Donna Jones, a woman with spina bifida, shares advice for people living with spina bifida.
Transcripts
Donna Jones: 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 thought 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 www.
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 the sky is the limit as to where we can go.
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Advances in Spina Bifida Research
Important Spina Bifida Information
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