Knowledge Sharing is Caring: Improving quality of life for people with spina bifida

SCI Care: What Really Matters

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In this episode, released to coincide with World Spina Bifida Day, host Anders Tennby (Wellspect) explores the challenges and opportunities in improving life quality for those with spina bifida. Joined by experts Hanna Gabrielsson from Sweden and Pierre Mertens from Belgium, the discussion delves into the complexities of this congenital disorder. Gabrielsson, a registered nurse with a thesis on adults with spina bifida, explains the condition's medical aspects and the challenges individuals face, including the need for consistent self-care and the impact of cognitive impairments. Mertens, president of Child-Help International and father to a daughter with spina bifida, brings a personal perspective, highlighting global disparities in care and support.

Resources Mentioned

• Guidelines for the Care of People with Spina Bifida (spinabifidaassociation.org)
• International Federation for Spina Bifida and Hydrocephalus (ifglobal.org)
• NOSCOC Special Interest Group on Spina Bifida (noscos.org)
• Child-Help International (www.child-help.international)
• MMCUP (Swedish national quality register for spina bifida) (mmcup.se)

Note on Prevalence Rates: During the podcast, there was a discussion about the prevalence of spina bifida. It's important to clarify that prevalence rates can vary significantly between regions and depending on whether prenatal diagnoses are included. In Sweden, for example, the estimated prevalence before prenatal screening is approximately 5 per 10,000, but the actual number of children born with spina bifida is considerably lower, at about 5-10 children per year (or 1 per 100,000 newborns). Globally, reliable incidence studies are lacking, especially in the Global South where many cases may not reach hospitals. Reported figures vary widely, from as high as 14 neural tube defects per 1,000 births in some areas to as low as 1 in 10,000 in others. This wi

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The SCI Care: What Really Matters podcast aims to provide valuable insights and the most up-to-date information for those providing care to people with spinal cord injury (SCI) worldwide. The vision of the International Spinal Cord Society (ISCoS) is to "facilitate healthy and inclusive lives for people with spinal cord injury or dysfunction globally".

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章节

1. Knowledge Sharing is Caring: Improving quality of life for people with spina bifida (00:00:00)

2. Improving Life for Spina Bifida (00:00:03)

3. Overcoming Misinformation (00:12:42)

4. Improving Spina Bifida Accessibility and Independence (00:27:20)

5. Global Collaboration for Spina Bifida (00:33:14)