The Challenges of Living with Spina Bifida

    Published: 06-16-2009
    Views: 11,601
    Donna Jones, a woman with spina bifida, talks about the challenges of living with spina bifida.

    Donna Jones: Hello, my name is Donna Jones and today I'd like to speak to you about the challenges with living with Spina bifida.

    Those living with Spina bifida face many of the same challenges today, as those who are not, unemployment and rising healthcare cost been chief among these. However, for those living with Spina bifida as well as others living with disabilities, these can be compounded exponentially.

    According to the National Organization on Disability, only 32% of Americans with disabilities between the ages of 18 and 64 are working.

    The health of people with Spina bifida is often fragile. We are subject to infection and kidney damage. Frequent absences from work due to illness can destroy chances to succeed.

    The cost of healthcare can also be extremely challenging for someone living with Spina bifida. Individuals with Spina bifida often experience different surgeries over the course of life, some routine and some complex.

    In 2003, I was scheduled for what was considered a routine shunt revision surgery. I was expected to be in the hospital for no more than 3 days. During my surgery there were life threatening complications and when I was finally able to leave the hospital two weeks later, I had accumulated over $100000 in out of pocket medical expenses.

    Sadly, my story is not unique. Lifetime healthcare cost for an adult with Spina bifida can exceed a million dollars. The good news is that there are many support mechanism which exist for those living with Spina bifida. Next we will, discuss what support mechanism exist for people with Spina bifida.