“He's a normal kid now”: an ethnographic study of challenges and possibilities in a new era of haemophilia care Cover

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“He's a normal kid now”: an ethnographic study of challenges and possibilities in a new era of haemophilia care

The Journal of Haemophilia Practice

Volume 7 (2020): Issue 1 (January 2020)

By: Thomas Hughes , Mikkel Brok-Kristensen , Yosha Gargeya, Anne Mette Worsøe Lottrup, Ask Bo Larsen , Ana Torres-Ortuño , Nicki Mackett and John Stevens

Open Access

|Dec 2020

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While advances in treatment mean that young people with haemophilia can now expect to lead a much more ‘normal’ life than previous generations, it is essential that the discourse around ‘normality’ in haemophilia does not obscure the remaining and new challenges they experience in their everyday lives.

Engaging in physical activity is one way in which PwH are living more ‘normal’ lives, and is important for joint health and wellness. Paradoxically, advances in in haemophilia care mean that younger PwH may be less aware of their condition, lacking embodied awareness and intuitive understanding of their limitations.

DOI: https://doi.org/10.17225/jhp00167 | Journal eISSN: 2055-3390

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Language: English

Page range: 150 - 157

Published on: Dec 17, 2020

Published by: Haemnet Ltd

In partnership with: Paradigm Publishing Services

Publication frequency: 1 issue per year

Keywords:

embodied knowledge,

embodied sense of the disease,

chronic illness,

new era of care

Related subjects:

Basic medical science,

Basic medical science, other,

Clinical medicine,

Clinical medicine, other,

© 2020 Thomas Hughes, Mikkel Brok-Kristensen, Yosha Gargeya, Anne Mette Worsøe Lottrup, Ask Bo Larsen, Ana Torres-Ortuño, Nicki Mackett, John Stevens, published by Haemnet Ltd
This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 3.0 License.

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