Here, you can find any of the interviews on this site.
Jago and Wilf are cousins. Both were diagnosed with Alport Syndrome as children when they began experiencing hearing problems. They both try to keep healthy and plan to go travelling after finishing their studies.
Jago and Wilf are full-time students. Ethnicity: White British
Katie and Sarah are sisters. Both were diagnosed with Alport syndrome in their early teens. Neither of them have any symptoms. They both try and keep healthy, and plan to go travelling after their studies.
Sarah, aged 18, is a full-time student at a local college. Katie, who is 15, is at school. Ethnicity: White British
Deborah has autosomal recessive Alport Syndrome. She doesn't have any symptoms. To her understanding, even if her children inherit the Alport gene, they will only be carriers. Deborah would like to see more information on autosomal recessive Alport Syndrome and to hear about other people's experiences.
Deborah is engaged to be married. She works full-time. Ethnicity: White British.
Dee was diagnosed with the rarest type of Alport Syndrome, autosomal dominant. She has been on dialysis for a year. She manages her condition by keeping active, taking responsibility for her treatment, doing her own research, and maintaining a sense of humour.
Dee was a bus driver for 9 years. She has two children aged 31 and 29 and two grandchildren. Ethnicity: White British.
Mariam had hearing loss from the age of 8. Shortly after at the age of 10 she experienced kidney failure and was put on the transplant list. She had a kidney transplant at the age of 12.
Mariam had kidney failure at the age of 10. She had a transplant when she was 12 years old. She is currently studying for a Higher National Certificate at a...
Amanda was 33 years old when she found out both her and her son had Alport Syndrome. She worries about the future but also tries to take a day at a time. She feels the best people to speak to about Alport Syndrome are the people that are living with it. because they know what you're going through.
Amanda was diagnosed with Alport Syndrome at the age of 33. She works part-time as a community living worker. Ethnicity: White Scottish.
Michael was diagnosed with X-linked Alport syndrome very recently at age 24. He has few symptoms and has recently started blood pressure medication. He feels overall that Alport syndrome is more of an inconvenience and doesn't let it affect his enjoyment of life. He is looking forward to travelling and living abroad in the future.
Michael was diagnosed with X-linked Alport syndrome at the age of 24. He is currently a full-time student. Ethnicity: White British
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.
