Hello, my name is Donna Jones. Over the last few years, I've had the pleasure of working along the side our nation legislators advising them on disability issues. This cause is especially close to my heart because I'm an adult living with spina bifida. Spina bifida is the most commonly occurring permanently disabling earth defect in this country, everyday in the United States, an average of eight births are affected by a birth defect like spina bifida. Today, over 180,000 Americans live with its challenges which can include full or partial paralysis, bowel and bladder, difficulties, latex allergies, obesity, skin breakdown, gastrointestinal disorders, learning disabilities and depression.
Spina bifida is a neural tube defect which occurs when the baby’s spinal colon bails to close. This occurs within the first 28 days of pregnancy often before women is even aware she’s 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. Scientists believe it can be attributed to a mix of genetic and environmental factors. Each of the 65 million women of child growing age in this country are at risk for spina bifida pregnancy.
The spina bifida association recommends that every women at child bearing age, take 400 micrograms 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 to telling you my story of what it’s like to live with spina bifida.
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