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Tony’s story: living with sickle cell disease

A personal experience of this autosomal recessive condition.videoexpert

Tony has sickle cell disease (SCD) and his story raises a number of issues. Tony talks about the varying symptoms experienced and the effect of the disease on his life and that of his family. He talks about the difficulties experienced around pain management, due to a lack of awareness by nursing and medical staff.

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How does this story relate to professional practice?

  • cogs Nursing Competencies

    [We have linked this story to the Nursing Competences in Genetics (NCG) for nurses, midwives and health visitors. Further information on the competence frameworks can be found here]

    Tony’s story highlights many areas of practice that the health professional should aim to be confident in demonstrating, but the key ones are as follows:

    The importance of knowing how to obtain and interpret a family history to assess who might also be at risk of a genetic condition, as his sister also suffers from the sickle cell. This is reflected in NCG 1.

    Tony talks about the usefulness of having information about his condition shared, although this did not occur until the age of 21. This has had a major impact on his life and that of his sister and family. Health professionals must be mindful of the impact the providing genetic information can have on individuals and their family (NCG 5).

    Through gaining information about the condition, Tony was able to understand what could be done to limit how he is affected by the symptoms associated with sickle cell disease. A health professional who understands the role of genetics in maintaining health (NCG 4) is able to support their clients more fully. For example, this might include an awareness of the manifestation of the disease as sickle cell crisis, the accompanying extreme pain and associated vulnerability to infection.

  • cogs Midwifery Competencies

    Content relating to the midwifery competencies in genetics will appear here shortly.

  • cogs Learning Outcomes for GPs

    Content relating to the learning outcomes in genetics for General Practitioners will appear here shortly.

  • cogs Learning Outcomes for Medical Students

    Content relating to the learning outcomes in genetics for medical students will appear here shortly.

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