Living with Spina Bifida

    Published: 06-16-2009
    Views: 23,265
    Donna Jones, a woman with spina bifida, discusses her experience living with spina bifida.

    Donna Jones: Hello, my name is Donna Jones. Over the last few years I have had the pleasure of working alongside our nation's legislators, advising them on disability issues. This cause is especially 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. Every day in the United States an average of 8 births are effected by a birth defect like Spina bifida.

    Today over 180000 Americans live with it's challenges which can include full or partial paralysis, gall and bladder difficulties, latex allergy, obesity, skin breakdown, gastrointestinal disorders, learning disabilities and depression.

    Spina bifida is a neural tube defect which 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. Scientists believe it can be attributed to a mix of genetics and environmental factors.

    Each of the 65 million women of child bearing age in this country, are at a risk for Spina bifida pregnancy.

    The Spina Bifida Association recommends that every women 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 to telling you my story, of what it's like to live with Spina bifida.