Here, you can find any of the interviews on this site.
Sammy was diagnosed with Alport Syndrome when she was a child. Her mum had Alport Syndrome and sadly passed away aged 39. Sammy had three miscarriages before having kidney failure at the age of 23. She had a kidney transplant when she was 28 years old. Her faith has been very important to her it has kept her going throughout.
Sammy works part-time as a teaching assistant. She lives with her husband. Ethnicity: Pakistani.
Diane has X-linked Alport Syndrome. She suffered hearing loss in her late teens and had kidney failure when she was 35 despite being a carrier'. Neil, her partner donated one of his kidneys to her when she was 38. They have two children who both have Alport Syndrome.
Diane and Neil have two children aged 2 and 4. Diane is a full time mum and Neil is a software engineer. White English.
Donna was diagnosed with X-linked Alport syndrome when she was 3 years old. She feels that the label of being a carrier' is a misconception and feels healthcare professionals should arm patients with more details. For Donna, diet and exercise are big influences on her kidney function and for this reason she tries to eat healthily and exercise.
Donna lives with her partner. She works full time. White English.
Cynthia was diagnosed with Alport Syndrome when she was 21 years old. She has had three transplants and has also had breast cancer. She has a hearing dog called Todd. Todd is a registered Hearing Dog for Deaf People.
Cynthia has been married for forty years. Her husband is her main carer. She has had three transplants. White British.
Anthony was the only one in his family to be diagnosed with Alport Syndrome. Despite having a full life with Alport Syndrome, the accumulation of work, health-related and personal distress contributed to him developing depression and eventually committing suicide. Philip, Mary, and Karen feel that hospitals need to provide better mental health support.
Philip and Mary are married with three children. Their son Anthony worked as a joiner. He sadly died by suicide in 2014 at the age of 45. Their daughter Karen...
Richard Y was diagnosed with X-linked Alport Syndrome aged 23. He has had no hearing loss. Ten years later after going on dialysis, he received a kidney donation from his cousin. He has had CBT to deal with anxiety post-transplantation. He worked full time throughout.
Richard Y works as a full time engineer. He and his partner have an 18 months old daughter. Ethnicity: White English.
Paul has X-linked Alport Syndrome and has had three transplants. For Paul and his family, the stability of work and looking forward to holidays have been very important in maintaining normal family life.
Paul works as full time stock manager. He and Christine are married with two children. Emma, their daughter also works full time. Ethnicity: White English.
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.
Kevin is married and works as a full time college teacher. Ethnicity: White and Caribbean.
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.
Alan has a degree in engineering. He is currently not in employment. Ethnicity: White English.
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.
Jayne works part time as an office clerk. She is married and has two children, aged 10 and 8. Ethnicity: White British.
