Hello, my name is Donna Jones. And today I'd like to speak to you about the challenges of living with spina bifida.
Those living with spina bifida face many of the same challenges today as those who are not, unemployment and rising health care cost being 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 health care 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 shot revision surgery. I was expected to be in the hospital for no more than three 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 $100,000.00 in out of pocket medical expenses. Sadly, my story is not unique. Lifetime health care cost for an adult with spina bifida can exceed a million dollars. The good news is that there are many support mechanisms, which exist for those living with spina bifida.
Next, we'll discuss what support mechanisms exist for people with spina bifida.
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