The Work is Left to You.
No matter how much work is done, how much care is given, family often struggle to find out what more they can do.
And that's why this blog is born. We too have a child with this birth defect in our family.
Friday, March 8, 2013
Be Your Own Advocate
Living With Spina Bifida
This section of the website provides information about living with spina bifida at different ages.
Spina bifida affects the entire family. Meeting the complex needs of a person affected by spina bifida involves the whole family and can be challenging at times. However, finding resources, knowing what to expect, and planning for the future can help.
Read Nancy's personal story about her son Clark who is living a full life with spina bifida. As a nurse, Nancy shares her persepctive on the importance of spina bifida research.
It is very important that individuals or parents of children with spina bifida take an active role in managing their own or their child’s care. To make important decisions people need to know about spina bifida, understand the treatment options, and then make the best possible choices for their health or the health of their child. If they don’t understand a medical term or concept, they should ask their health care provider to explain. They also should take notes and ask questions during visits to the doctor or clinic.
The Spina Bifida Association provides information on spina bifida, and can be helpful in recommending clinics or health care providers who are experts in
the care of children and adults with spina bifida.
This section of the website provides information about living with spina bifida at different ages.
Read Nancy's personal story about her son Clark who is living a full life with spina bifida. As a nurse, Nancy shares her persepctive on the importance of spina bifida research.
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