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Rob’s story: Living with Von Hippel Lindau

Daily life with this autosomal dominant condition.

Rob shares his story of living with Von Hippel Lindau (VHL) – both the symptoms that he experiences and the uncertainty he deals with on a daily basis, as he is never sure what new symptoms will appear.

Toolkit

  • reflection Point for reflection

    1. The family should receive some support from the genetic service during testing, but how would you offer additional support as a primary care practitioner? What might be the long-term needs of those who are found to have the gene change and those who are not?
    2. Consider the current legislation by insurance companies in relation to people with genetic conditions. Is this an issue that should be considered by Rob’s family as they think about testing? (See Links section for further information about current legislation from government and insurance bodies)
  • Activities Activities

    1. Consider the potential specialist areas of health care that the patient will need. How do you think that care could be effectively co-ordinated, and by whom?
    2. Consider the current legislation by insurance companies in relation to people with genetic conditions. Is this an issue that should be considered by Rob’s family as they think about testing? (See Links section for further information about current legislation from government and insurance bodies)
  • quotes Quotes to reflect upon

    "...I feel that if only everyone went through what I have gone through the world would be better place – people would realise life’s too short and be less selfish."

    "Reassurance and understanding are often under-prescribed by the NHS as they don’t come in the form of a tablet."

    "...although I can get advice on the medical symptoms, I feel a bit lost when it comes to non-medical issues relating to someone with a genetic condition."

    "...a genetic condition is with you every second of every day……it never fades with time…It’s a constant ‘threat’. It’s like a really good suspense thriller which makes you sit on the edge of your seat – you know something could happen at any moment, you just don’t know when…"

  • Further Information Further Information

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]

    Rob’s brother and his family were identified for testing and could benefit from further genetic services and information (NCG 1) because VHL is dominantly inherited.

    Rob’s diagnosis has affected his brother, who feels guilt as the sibling free of the condition. This is an issue they have discussed openly and this example highlights how genetic information has implications for family members as well as individuals (NCG 5).

  • 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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