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Mary’s story: My epilepsy

Living with the complexities of a multi-factorial condition.

Mary has epilepsy and describes her symptoms and the medical treatments she has had to undergo, to try and manage her epilepsy successfully. She also describes the emotional journey undertaken as she tries to understand her condition.

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Toolkit

  • reflection Point for reflection

    1. Patients may be the first to suggest that a condition is inherited in their own family. How seriously do you as a healthcare practitioner take this suggestion?
    2. Are you able to take a three generational family history and draw a clear family tree?
  • Activities Activities

    1. How would you have dealt with the concerns of Mary’s family following her initial seizure? Would you have provided them with the diagnosis in the same way?
    2. Using the resources available to you, what is the current understanding regarding the genetic factor(s) involved in epilepsy?
  • quotes Quotes to reflect upon

    "You asked what more could be done; in my case I would say find a way to speak to the family of the person who has epilepsy especially if they are adults"

    "I realise now that I could have contacted the nurse more than I did"

  • 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]

    Mary has met with many health professionals during the course of her illness. Her story illustrates the need for health care professionals to be able to provide patients with current, credible information (NCG 7).

    The complex interactions between multiple gene products and the environment that result in multifactorial conditions such as epilepsy are still poorly understood. It is important for health professionals to appreciate that these complexities can lead to variability in the signs and symptoms of a condition, and may modify an individual’s response to treatment (NCG 4). Research into these factors may provide new therapeutic options to manage these conditions more effectively.

  • cogs Midwifery Competencies

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

  • cogs Learning Outcomes for GPs

    We have linked this story to the learning outcomes for GPs listed in the Royal College of General Practitioners Curriculum Statement 6 ‘Genetics in Primary Care’, which describes the knowledge, skills and attitudes that a GP requires when relating to patients and families with genetic conditions. Further information on these learning outcomes can be found at: www.rcgp-curriculum.org.uk/PDF/curr_6_Genetics_in_Primary_Care.pdf

    Epilepsy is a complex, multi-factorial condition and research is ongoing into its variable symptoms and possible new therapies. Mary’s GP was interested in her medical background and was keen to learn more through Mary’s own research and findings in order to try and work with her to provide the most effective clinical management. Here, the GP recognised the importance of keeping informed and up-to-date with the latest information and advancements in order to offer the most appropriate and effective clinical management (GP-9). It is now recognised that many epilepsies have a genetic component and as such, GPs should be aware of this and be able to make appropriate referrals to genetic services (GP-1g).

    Mary’s new GP was committed to finding the best solution to her epilepsy and migraines. He took the time to see Mary on a weekly basis to monitor progress and discuss her treatment, appreciating the need to devote additional time to Mary in order to deliver the best clinical management of her condition (GP-7a).

    Her previous GP realised his own limitations with regard to managing her epilepsy and referred her to a specialist neurosurgeon who subsequently provided Mary with access to a specialist nurse (GP-8a).

  • cogs Learning Outcomes for Medical Students

    We have linked this story to the learning outcomes in genetics for medical students based on curriculum statements developed in 1990 and 1996 and published in ‘Teaching Medical Genetics to Undergraduate Medical Students’ (British Society for Human Genetics/Joint Committee on Medical Genetics, 2003; www.bshg.org.uk/documents/official_docs/Undergrad.doc).

    Medical students should be aware that both genetic and environmental factors can have a role to play in multifactorial conditions such as epilepsy, although how these interact is not always clear (MS2).

    Mary describes how she has tried to understand and manage her illness effectively with various types of treatments and had consultations with numerous health professionals. Her story indicates the need for healthcare professionals to know how to obtain current, credible information about clinical applications of genetics (MS6), and be able to work in partnership with patients and communicate effectively, listening to them and understanding their beliefs about their condition (MS4).

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