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Frances was diagnosed with Alport Syndrome when she was 16 years old. She doesn't feel like she has many symptoms. It was only when she was pregnant that she developed symptoms. She is most concerned about her son who has Alport Syndrome.
Frances works full time as a learning support worker. She has a daughter aged 11 and a son aged 7. Ethnicity: White Scottish.
Alison has X-linked Alport Syndrome and is the first person in her family to have it. Her kidney function declined in her 20s and she started dialysis when she was 27 years old. She had a transplant when she was 32 years old. She has no problems with her hearing or eyesight.
Alison lives with her partner. She works full-time as an administrative assistant. White Scottish.
Debra was diagnosed with X-linked Alport Syndrome when she was a baby. She remembers going to the hospital about once a year for check-ups from a young age. Her Dad had Alport Syndrome and had multiple health problems throughout his life, which greatly affected her feelings about having children.
Debra works part time in recruitment. She is married and has a son, aged 3 who does not have Alport Syndrome. Ethnicity: White Scottish.
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.
