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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.
Michael is a retired consultant surgical gastroenterologist. He is married with two daughters and has three grandsons. Ethnicity: White British.
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.
Robin works part time as a bank director. He is married and has two sons, aged 25 and 28. Ethnicity: White English.
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.
Michelle works part-time as a teacher. She is married with two children, a daughter and son, aged 21 and 13. Ethnicity: White British.
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.
Angela works part-time at a legal counsel. She is married with 2 children, aged 3 and 6. Ethnicity: White British.
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.
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.
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.
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.
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.
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.
Karen was diagnosed with X-linked Alport Syndrome. Despite her being labelled a carrier' she developed kidney failure aged 39. She is on haemodialysis three times a week and is on the waiting list for kidney transplantation. For Karen, the diagnosis of Alport Syndrome didn't make much difference as she already strongly suspected it was Alport Syndrome. Her main concern is the management of her kidney disease and also raising awareness about being a female carrier'.
Karen is 42 years old. She is married and lives with her partner. Ethnicity: White British.
Patrick was diagnosed with X-linked Alport Syndrome at a very young age due to a family history of Alport Syndrome. Alport Syndrome has primarily affected his hearing so far, but Patrick expects to have a kidney transplantation as soon as his kidneys start declining. In general, Patrick feels that with social support Alport Syndrome doesn't have to be a life changing condition.
Patrick is in his last year of college. His family are part of a national charity and support group for people with Alport syndrome, and Patrick is active in awareness-raising...
Professor Frances Flinter has conducted research to identify the gene for Alport Syndrome.
Frances Flinter is Professor in clinical genetics and consultant geneticist at Guy’s Hospital. She was trained in paediatrics and completed her specialist training in genetics. She has also conducted research...
