Living with Spina Bifida

Living with Spina Bifida

How Living with Spina Bifida has Changed Over the Years

How Living with Spina Bifida has Changed Over the Years

The Challenges of Living with Spina Bifida

The Challenges of Living with Spina Bifida

Support Mechanisms for People Living with Spina Bifida

Support Mechanisms for People Living with Spina Bifida

Advice for People Living With Spina Bifida

Advice for People Living With Spina Bifida

Living with Spina Bifida

Living with Spina Bifida

Diabetes Information for Older Adults

Diabetes Information for Older Adults

Signs & Symptoms of Diabetes in Older Adults

Signs & Symptoms of Diabetes in Older Adults

Living with Diabetes as an Older Adult

Living with Diabetes as an Older Adult

Diabetes Treatment Options for Older Adults

Diabetes Treatment Options for Older Adults

Managing Diabetes Complications as an Older Adult

Managing Diabetes Complications as an Older Adult

Expectations For In-Home Care

Expectations For In-Home Care

Tips To Reduce The Risk Of Falling

Tips To Reduce The Risk Of Falling

10 Safety Tips For Medicine Management

10 Safety Tips For Medicine Management

How To Change A Wound Dressing

How To Change A Wound Dressing

How To Flush Your IV

How To Flush Your IV

Handling Holiday Depression

Handling Holiday Depression

Managing Food Allergies In School

Managing Food Allergies In School

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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.

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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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