"Spina bifida is a condition that affects the spine and is usually apparent at birth. It is a type of neural tube defect (NTD). To learn what it’s like to live with this condition or how families are affected, read these real stories from people living with spina bifida.
Living with Pressure Sores
“Paying attention to yourself is the biggest form of self-care you can do. Spina bifida is not a one-size-fits-all condition.”
Spina bifida is a birth defect of the spine. People living with spina bifida can have limited or no feeling in certain parts of their body. This limited feeling may leave them unable to feel pressure sores that may develop in areas with continuous pressure from equipment they need to move around, such as under and around braces, specially designed shoes, or wheelchairs.
Staff at spina bifida specialty clinics participating in CDC’s National Spina Bifida Patient Registry (NSBPR) collected data from 2009–2016. They found that 19% of children and adults enrolled in NSBPR reported a pressure sore since their last clinic visit.1 A study.2 using hospital discharge information found that people with spina bifida who were hospitalized with pressure sores stayed in the hospital 1.2 days longer and had $1,182 in additional hospital costs, on average, compared to people with spina bifida who were hospitalized without pressure sores. In 2016, a pressure sore education and tracking program was designed by CDC and put into place at some NSBPR clinics. Tracking of pressure sores at these clinics is ongoing..."Spina Bifida
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