Profiles

Here, you can find any of the interviews on this site.



Liz X

Liz was formerly a classroom support worker in a school for children with special needs. At the time of the interview she was divorced with 2 children aged 18 and 17. Ethnicity: white British. Liz was diagnosed with inherited MND in 1998, the sixth member of her family to be diagnosed. She found it important to have a positive mindset and show her children that MND is not the end of the worl.

  • Background

    Liz was formerly a classroom support worker in a school for children with special needs. At the time of the interview she was divorced with 2 children aged 18 and...

  • Age at interview 45

    • Liz Y

    Liz was formerly a hydrologist (environmental scientist). She and her husband moved back from New Zealand after she was diagnosed to be closer to family. Ethnicity: white British. Liz was diagnosed with an inherited form of MND in 2004. Because her father and uncle had died of the condition, she knew what to expect, which was both helpful and difficult.

  • Background

    Liz was formerly a hydrologist (environmental scientist). She and her husband moved back from New Zealand after she was diagnosed to be closer to family. Ethnicity: white British. Liz was...

  • Age at interview 34

    • Georgia Z

    Georgia is 26 and works full time as a nanny and personal trainer. Ethnicity: white British. Georgia's mum and aunt were diagnosed with MND just a couple of months apart. She cared for her mum over her illness. After her mum died, Georgia decided to have pre-symptomatic genetic testing, and was told she does not carry the C9orf72 gene variant.

  • Background

    Georgia is 26 and works full time as a nanny and personal trainer. Ethnicity: white British. Georgia's mum and aunt were diagnosed with MND just a couple of months apart....

  • Age at interview 26
  • Sex/Gender Female

    • Jade

    Jade is 32 and is married with two children, who are 1 and 2. She works part time as a housekeeper for the NHS. Ethnicity: white British. Jade's aunt and nan have been affected by MND and FTD. She decided to have pre-symptomatic genetic testing and received a positive result. Although she has struggled with feelings of guilt, Jade now sees it as part of life and focuses on the positives.

  • Background

    Jade is 32 and is married with two children, who are 1 and 2. She works part time as a housekeeper for the NHS. Ethnicity: white British. Jade's aunt and...

  • Age at interview 32
  • Sex/Gender Female

    • Louisa

    Louisa is in her 30s. She is married and has one young child. She works as a healthcare professional. Ethnicity: white British. Louisa's grandma died of MND when she was a teenager. Her mum recently developed MND and frontotemporal dementia caused by the C9orf72 gene variant. Louisa hasn't yet decided whether to have genetic testing; for now, she emphasises making the most of life.

  • Background

    Louisa is in her 30s. She is married and has one young child. She works as a healthcare professional. Ethnicity: white British. Louisa's grandma died of MND when she was...

  • Sex/Gender Female

    • Kirsty

    Kirsty is 35 and works full time as an IT manager. Ethnicity: White British. Kirsty's grandmother and two uncles have been affected by MND and FTD. After having pre-symptomatic genetic testing, her mum was told that she does not carry the C9orf72 gene variant. Kirsty feels grateful that her immediate family will not be affected.

  • Background

    Kirsty is 35 and works full time as an IT manager. Ethnicity: White British. Kirsty's grandmother and two uncles have been affected by MND and FTD. After having pre-symptomatic genetic...

  • Age at interview 35
  • Sex/Gender Female

    • Harriet

    Harriet is 35 and works part time as a project manager. She is married with one child, who is two. When Harriet's mum and aunt were diagnosed with MND, she had pre-symptomatic genetic testing to inform decisions over having another child. She was told she carries the C9orf72 gene variant and is currently undergoing pre-implantation genetic testing.

  • Background

    Harriet is 35 and works part time as a project manager. She is married with one child, who is two. When Harriet's mum and aunt were diagnosed with MND, she...

  • Age at interview 35
  • Sex/Gender Female

    • Kelly

    Kelly is 30 and is married. She works full time as a Service Administrator. Ethnicity: White British Kelly's family has been affected by MND and FTD, caused by the C9orf72 gene variant. Kelly decided to seek pre-symptomatic genetic testing to make an informed choice on having children. After facing several challenges, she has received a negative result.

  • Background

    Kelly is 30 and is married. She works full time as a Service Administrator. Ethnicity: White British Kelly's family has been affected by MND and FTD, caused by the C9orf72...

  • Age at interview 30
  • Sex/Gender Female

    • Hugh

    Hugh is 66 and before he retired, worked as an Ecologist. He has two adult children aged 29 and 35 and is widowed. Ethnicity: White British Hugh was diagnosed with MND aged 64. Because his aunt had also been affected, he had genetic testing, which failed to identify a gene variant associated with MND. Hugh's focus now is on making the most of life and finding ways to access the outdoors.

  • Background

    Hugh is 66 and before he retired, worked as an Ecologist. He has two adult children aged 29 and 35 and is widowed. Ethnicity: White British Hugh was diagnosed with...

  • Age at interview 66
  • Sex/Gender Male

    • Sam

    Sam was told about MND in the family after a relative, who had been diagnosed, had a genetic test. Finding out about the C9orf72 gene variant was more of a bombshel than expected. Sam is considering whether to have pre-symptomatic genetic testing.

  • Background

    Sam was told about MND in the family after a relative, who had been diagnosed, had a genetic test. Finding out about the C9orf72 gene variant was more of a...