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'.

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.

Professor Frances Flinter has conducted research to identify the gene for Alport Syndrome.

• Alport syndrome profiles: Healthcare professionals

Professor Neil Turner is a leader in kidney research, and is active in multiple Alport Syndrome-related research projects.

• Alport syndrome profiles: Healthcare professionals

Dr Omar Mahroo is currently working on a long term research project which takes high resolution images of the eye of people with Alport Syndrome to try to understand how Alport Syndrome affects the eye, and to see if eye scans can help detect Alport Syndrome.

• Alport syndrome profiles: Healthcare professionals

Cathleen was diagnosed with atrial fibrillation and heart failure 16 months ago. She takes lots of medicines but feels tired. She sees a specialist cardiac nurse at her local hospital every two months, and her GP when necessary. She feels lonely and depressed.

Daniel was diagnosed 3 years ago with cardiomyopathy and heart failure after experiencing breathlessness. He takes medicines and has an ICD but continues to experience breathlessness and fatigue and can do very little physical activity, which frustrates and angers him. He cannot work and lives off state benefits.

Paula was born with congenital heart disease. After an operation aged 3 her heart was healthy until her 30s. She has had a new heart valve and a pacemaker. She is constantly tired and breathless on exertion. She regularly travels 400 miles for check-ups with her original cardiologist whom she trusts completely.

Tim's heart failure was caused by a series of heart attacks about 10 years ago. A cardiac arrest also caused brain damage resulting in short term memory loss. He depends on his wife to give him his medicines. He is in constant pain from his spinal injury and two brain tumours but has a positive attitude to life.

Paul was diagnosed with dilated cardiomyopathy 15 years ago. He has a biventricular pacemaker, takes minimal medication and can still do everything he wants to despite becoming breathless and tired. He helps run a local support group and gives one-one support to other people with cardiomyopathy.