Profiles

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



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

    • 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

    • Lizbeth

    Lizbeth is 51 and works as a young person's counsellor. She is married and has three children, aged 17, 22 and 24. Ethnicity: White Welsh. Lizbeth has lived with MND from a young age, losing her grandmother and mother to the disease. She had pre-symptomatic testing and was told she has the C9orf72 gene variant. Coming to terms with this was harder than she imagined, but it no longer defines her.

  • Background

    Lizbeth is 51 and works as a young person's counsellor. She is married and has three children, aged 17, 22 and 24. Ethnicity: White Welsh. Lizbeth has lived with MND...

  • Age at interview 51
  • Sex/Gender Female

    • Calum

    Calum is 26 and works as a legal assistant. He is white British. Calum's aunt and father died of MND, caused by the C9orf72 gene. After being told that he may be at risk, Calum decided to have pre-symptomatic genetic testing. Although he received a positive result, he feels better able to plan for the future.

  • Background

    Calum is 26 and works as a legal assistant. He is white British. Calum's aunt and father died of MND, caused by the C9orf72 gene. After being told that he...

  • Age at interview 26
  • Sex/Gender Male

    • Anthony

    Anthony is 45 and works as a partner in an equine business. He is married and has three children who are 10, 7 and 4. Ethnicity: white British. Anthony decided to have pre-symptomatic genetic testing after finding out about the C9orf72 gene variant in his family. He received a positive result, but tries to stay positive by following research developments around MND and taking part in studies.

  • Background

    Anthony is 45 and works as a partner in an equine business. He is married and has three children who are 10, 7 and 4. Ethnicity: white British. Anthony decided...

  • Age at interview 45
  • Sex/Gender Male

    • Lillian

    Lillian is 55 and works as a civil servant. She is married. Ethnicity: white British Lillian knew she wanted to have pre-symptomatic genetic testing after finding out the gene variant linked to MND in her family. Although she received a positive result, she does not regret her decision, and is hopeful for research progress in the future.

  • Background

    Lillian is 55 and works as a civil servant. She is married. Ethnicity: white British Lillian knew she wanted to have pre-symptomatic genetic testing after finding out the gene variant...

  • Age at interview 55
  • Sex/Gender Female