Alport Syndrome


In this section you can find out about the experiences of living with Alport Syndrome by seeing and hearing people share their personal stories on film. Our researchers travelled all around the UK to talk to 36 people in their own homes. Find out what people said about issues such as the emotional side of living with Alport Syndrome, different types of treatment and medication and the impact of Alport Syndrome on work, relationships and lifestyle. We hope you find the information helpful and reassuring. This resource has been dedicated to the memory of Anthony Whitworth

You can start viewing topics by clicking the topics from the list on the left. You can also view 'People's Profiles' from the tab above.

You can find out more about the early signs of kidney problems on our Kidney Health section. You may also be interested in our mental health sections and our section on people’s experiences of long term health conditions

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Publication date: September 2017
Review date: September 2019


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