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.
Transcripts
Donna Jones: Hello! My name is Donna Jones. Over the last few years I have had the pleasure of working alongside our nation's legislature, advising them on disability issues. This cause is specially close to my heart, because I am an adult living with spina bifida. Spina bifida is the most commonly occurring permanently disabling birth defect in this country. Everyday in the United States, an average of eight birth are affected by a birth defect like spina bifida.
Today over 180,000 Americans live with this challenges, which can include full or partial paralysis, bowel and bladder difficulties, latex allergy, obesity, skin breakdown, gastrointestinal disorders, learning disabilities and depression.
Spina bifida is a neural tube defect. It occurs when the baby spinal column fails to close. This occurs within the first 28 days of pregnancy, often before a woman is even aware, she is pregnant. It is not one condition. But rather a multitude of problems which can affect the mind, the body and the spirit.
There is no known cause for spina bifida. Scientist believe it can be attributed to a mix of genetic and environmental factors. Each of the 65 million women, of child bearing age in this country are the risk for spina bifida pregnancy.
The Spina Bifida Association recommends that every woman of child bearing age, take 400 micro grams daily of folic acid. Taking folic acid daily, can reduce the risk of having a child with spina bifida, by up to 70%.
Today I look forward telling you my story of what it's like to live with spina bifida.
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