Profiles

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



Nick

Nick's daughter Heather and his wife Julie both have a condition where their hair doesn't grow. He took part in the 100,000 Genomes Project along with his wife and daughter in the hope to help them find out more about their condition.

  • Background

    Nick is married to Julie and they have one daughter. He works as a regional business manager. He is White English.

  • Age at interview 52
  • Sex/Gender Male
  • Heather and Julie

    Julie and Heather both have a condition which means that their hair doesn't grow. Although Heather was given a diagnosis of ectodermal dysplasia she does not have all the symptoms associated with this condition. They hope that by taking part in the 100,000 Genomes Project they might find out some more answers, but mainly they would like to help others in a similar situation.

  • Background

    Heather is currently studying for her A-levels and her mum Julie works as an analyst. They are White English.

  • Arthur

    Arthur was diagnosed with bladder cancer at the end of 2016. He agreed to take part in the 100,000 Genomes Project before his operation to remove the tumours.

  • Background

    Arthur is retired, but previously worked in admin. He is married and has three adult children. He is white English.

  • Age at interview 82
  • Sex/Gender Male
  • Sheila and Edward

    Sheila has mitochondrial disorder and several other long term conditions. Edward has Chronic Fatigue Syndrome and was diagnosed with Asperger syndrome aged 10.

  • Background

    Sheila and her son, Edward, are both White British.

  • Nicola

    Nicola was diagnosed with ovarian cancer in July 2016 and participated in the 100,000 Genomes Project shortly after. Nicola's son died of cancer in 2012 and she wanted her DNA to be used to help further cancer research. She provided blood and tissue samples for the genomes project but has since been told that it will not be included in the research.

  • Background

    Nicola works as a university professor and is white English. She is married and has three adult children, one of whom died of cancer in 2012.

  • Age at interview 57
  • Sex/Gender Female
  • Kay

    Kay's husband and youngest son both have polycystic kidney disease. Her son may also have calcium on his kidney, although this has not yet been diagnosed. They have signed up to take part in the 100,000 Genomes Project.

  • Background

    Kay works part-time as a Customer Service Assistant, and is white British. She is married and has three children, aged 12, 10, and 5. Her youngest child has polycystic kidney...

  • Age at interview 35
  • Sex/Gender Female
  • Lucy Y

    Lucy Y has hypermobility Ehlers Danlos Syndrome (EDS), it affects collagen making it very fragile, which means that her joints and other soft tissues are prone to injuries and further conditions. Her initial reason to participate in the 100,000 Genomes Project was to find out whether the condition was passed down in her family, and whether her child inherited it and also for research as no DNA testing or treatment is available currently.

  • Background

    Lucy Y is an interior designer. She is married and has one child who is 12 years old.

  • Age at interview 39
  • Sex/Gender Female
  • Lucy X

    Lucy was diagnosed with primary ciliary dyskinesia at the age of 4. She hopes that taking part in genomics research will raise awareness and contribute to better provision for people with the same conditions.

  • Background

    Lucy works as a schools liaison officer and is white Welsh.

  • Sex/Gender Female
  • Leanne

    Leanne's daughter, Emily, has a genetic condition that doctors have not been able to identify. Leanne hopes that participating in the 100,000 Genomes Project may provide some answers to Emily's condition.

  • Background

    Leanne lives with her parents, son and daughter.

  • Age at interview 34
  • Sex/Gender Female