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In this episode, host Rima Kamal (Wellspect) explores the complexities of caring for children with spina bifida with Dr Fahad Alyami, Head of the Saudi Paediatric Urology Group and Associate Professor at King Faisal Specialty Hospital and Research Centre in Riyadh. The discussion delves into the critical aspects of paediatric care for those with spina bifida, from early intervention to adolescent transition. Dr Alyami explains the importance of bladder management from birth, the challenges families face in daily care routines, and the crucial role of multidisciplinary healthcare teams.

The conversation addresses key aspects of paediatric care, particularly the transition from childhood to adult healthcare services. Dr Alyami emphasises the significance of specialised spina bifida clinics where multiple specialists can coordinate care under one roof, highlighting the development of transitional urology as a subspecialty to bridge the gap between paediatric and adult care. The discussion concludes with inspiring success stories of individuals with spina bifida who have gone on to lead fulfilling lives, including having families of their own, demonstrating how proper medical care and support can positively impact life outcomes.

The opinions of our host and guests are their own; ISCoS does not endorse any individual viewpoints, given products or companies.

You can follow us on Twitter and LinkedIn

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".

Contact us directly with any questions or comments at iscos@associationsltd.co.uk

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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

The opinions of our host and guests are their own; ISCoS does not endorse any individual viewpoints, given products or companies.

You can follow us on Twitter and LinkedIn

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".

Contact us directly with any questions or comments at iscos@associationsltd.co.uk

Send us a text

As anticipation builds for the 63rd Annual Meeting of the International Spinal Cord Society, Professor Micheal Fehlings shares his excitement with Dr Stolwijk-Swuste, a Rehabilitation specialist and Associate Professor at De Hoogstraat Revalidatie.

Our hosts invite the spinal cord community to this unique event, located in a charming and inspiring venue: A Room with a Zoo at Flanders Meeting & Convention Center, Antwerp.

This 3 day event unites leading experts in spinal cord injury care and research to share groundbreaking advancements and innovative solutions in the pursuit of bettering the lives of individuals living with, or caring for those with a spinal cord injury.

To learn more about our interactive programme and to register your place, please visit: https://iscosmeetings2024.org

The opinions of our host and guests are their own; ISCoS does not endorse any individual viewpoints, given products or companies.

You can follow us on Twitter and LinkedIn

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".

Contact us directly with any questions or comments at iscos@associationsltd.co.uk