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Inherited motor neurone disease (MND)

  • Overview
  • Finding out about inherited MND in the family
    • Finding out about inherited MND in the family
    • Finding out the name of the gene variant in the family
    • Frontotemporal dementia (FTD): Understandings and experiences
  • Knowledge and information around inherited MND
    • Seeking information on inherited MND
    • Understanding genetics in inherited MND
  • Living with an inherited form of MND
    • Being diagnosed with an inherited form of MND
    • Genetic testing after a diagnosis of MND
    • Sharing genetic test results after a diagnosis of inherited MND
    • Adapting to life with MND: Attitudes towards and impact on life
    • Care, support and living well with inherited MND
  • Living with an increased genetic risk of MND
    • The emotional and psychological impact of living with genetic risk
    • Times when worries about inherited MND come to the surface
    • Ways of coping with worries around inherited MND
    • Attitudes to life, priorities and perspectives on living with genetic risk
    • Professional support and monitoring (including after genetic testing)
    • Living with an increased genetic risk: Preparing for the future
  • Pre-symptomatic genetic testing for inherited MND
    • Deciding whether to have pre-symptomatic genetic testing: Reasons for wanting to know
    • Deciding whether to have pre-symptomatic genetic testing: Reasons for not wanting to know (yet)
    • Talking about genetic testing decisions with family, friends, and healthcare professionals
    • Having genetic counselling before pre-symptomatic genetic testing
    • Having the blood test and waiting for the results
    • Receiving a negative pre-symptomatic genetic test result
    • Receiving a positive pre-symptomatic genetic test result
    • Sharing pre-symptomatic genetic test results with family, friends and others
  • Making decisions around having children in families affected by inherited MND
    • Having children in families affected by inherited MND: past experiences and future plans
    • Options when having children in families affected by inherited MND: Genetic testing and pregnancy
  • Caring for a relative with inherited MND
    • Providing care and support to a relative with inherited MND
    • Impact of caregiving on family carers
  • Family communication, relationships and support in inherited MND
    • Talking about inherited MND in the family: differing perspectives
    • Telling children about the family history of inherited MND and genetic risk
    • Telling partners about inherited MND in the family
    • Finding support around inherited MND
  • Research and drug trials in (inherited) MND
    • Research in MND: views and experiences
    • Volunteering, raising awareness and fundraising
  • Messages to others
    • Messages to other families affected by inherited MND
    • Messages to healthcare professionals: Living with inherited MND and genetic testing
    • Messages to healthcare professionals: Care and support for families living with MND
  • Glossary
    • Glossary and explanation of key terms
  • People's Profiles
    • People with inherited MND
    • Family members who have not had pre-symptomatic genetic testing
    • Family members with a positive pre-symptomatic genetic test result
    • Family members with a negative pre-symptomatic genetic test result
    • Partners and family caregivers
  • Resources and Information
  • Credits

Inherited motor neurone disease (MND)

Profiles - People with inherited MND

Alison

Dani

David

Hugh

John

Ken

Liz X

Liz Y

Sarah

Stuart

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