Profiles

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



Kevin

Kevin was diagnosed with X-linked Alport Syndrome as a child. He developed hearing loss and some eye-sight problems, but neither posed him many challenges in his daily life. He had his kidney transplant after 4 years of being on home dialysis.

  • Background

    Kevin is married and works as a full time college teacher. Ethnicity: White and Caribbean.

  • Age at interview 42
  • Sex/Gender Male
  • Alan

    Alan was diagnosed with X-linked Alport Syndrome after he experienced kidney failure at the age of 19. After having a transplant which lasted 22 years, he lost his kidney after a motorbike accident.

  • Background

    Alan has a degree in engineering. He is currently not in employment. Ethnicity: White English.

  • Age at interview 49
  • Sex/Gender Male
  • Jayne

    Jayne only found out that she had X-linked Alport Syndrome when her eldest son started developing symptoms of hearing loss. She remains symptoms-free, but her main concern is her sons hearing.

  • Background

    Jayne works part time as an office clerk. She is married and has two children, aged 10 and 8. Ethnicity: White British.

  • Age at interview 40
  • Sex/Gender Female
  • Michael X

    Michael's first wife was diagnosed with X-linked Alport Syndrome, and his daughters and two of his grandsons also carry the Alport gene. Michael finds that renal failure is the most serious aspect of Alport Syndrome, yet he is hopeful that transplantation will develop significantly in the near future.

  • Background

    Michael is a retired consultant surgical gastroenterologist. He is married with two daughters and has three grandsons. Ethnicity: White British.

  • Age at interview 82
  • Sex/Gender Male
  • Robin

    Robin was diagnosed with X-linked Alport Syndrome at the age of 26. He has had 2 kidney transplants so far, and he is waiting for the third one. Robin has worked throughout, and he maintains that one can live a full life despite having kidney failure.

  • Background

    Robin works part time as a bank director. He is married and has two sons, aged 25 and 28. Ethnicity: White English.

  • Age at interview 62
  • Sex/Gender Male
  • Michelle

    Michelle has benign haematuria (blood in the urine) and is a carrier of the autosomal recessive inherited Alport gene. Her children were diagnosed with autosomal recessive Alport Syndrome. Although Michelle's children don't have severe symptoms, Michelle is worried about their long-term prognosis, especially since there is not much information on their type of Alport Syndrome.

  • Background

    Michelle works part-time as a teacher. She is married with two children, a daughter and son, aged 21 and 13. Ethnicity: White British.

  • Age at interview 47
  • Sex/Gender Female
  • Angela

    Angela was diagnosed with autosomal recessive Alport Syndrome. She received a kidney transplant after a year of home dialysis. During her dialysis period, she continued working full-time. At the present, her main focus is to stay healthy until her children grow up to be self-sufficient.

  • Background

    Angela works part-time at a legal counsel. She is married with 2 children, aged 3 and 6. Ethnicity: White British.

  • Age at interview 40
  • Sex/Gender Female
  • Richard X

    Richard X was diagnosed with X-linked Alport Syndrome at the age of 9. He's had two kidney transplants to date. He's had partial hearing loss, but feels that Alport Syndrome doesn't affect him in his day-day life.

  • Background

    Richard X works full-time as a procurement manager. He is married with two children, a daughter the age of 14, and a son aged 11. Ethnicity: White British.

  • Age at interview 39
  • Sex/Gender Male
  • Lucy

    Lucy was diagnosed with spontaneous X-linked Alport Syndrome when she was a child. Two of Lucy's children carry the Alport gene. Lucy would like to make sure that they will receive the best possible care in the future. Until then, they try to live as normally as possible as a family.

  • Background

    Lucy is married and has three children, aged 9, 7, and 2. She is self-employed, and works as a pet behaviourist. Ethnicity: White British.

  • Age at interview 38
  • Sex/Gender Female
  • Steve

    Steve was diagnosed with X-linked Alport Syndrome at 3, but didn't have any symptoms until his early 30s. He was on dialysis for 8 months, and he received a live kidney transplant from afriend. He has had no hearing loss.

  • Background

    Steve works full-time and has a daughter, aged 4. He is active in a national charity and support group for people with Alport Syndrome. Ethnicity: White British.

  • Age at interview 37
  • Sex/Gender Male