Living with Alport Syndrome

AIM

The aim of this project is to gain a better understanding of how Alport Syndrome affects people with the condition in their everyday life. It will explore the social and emotional impact of living with Alport Syndrome, with a focus on children and young peoples’ experiences.

Why this is important

Alport Syndrome is a rare inherited condition that causes progressive kidney damage, hearing loss and eyesight problems. As it is rare, it is vitally important that we gain more understanding from people who live with the condition to ensure that future treatment, service design and information can be improved. Ongoing research has focused on the medical, genetic and biological aspects of Alport Syndrome. However, little is known about the everyday aspects of what it is actually like to live with and experience Alport Syndrome. In particular, young people with Alports might undergo dialysis and a kidney transplantation as early as in their teens or 20s. This study will therefore aim to bridge the gap in knowledge about children and teenager’s experiences of Alports. It will also bring to light the less talked about aspects of the condition and how it impacts on things like school, work, social lives, friends and family relationships and leisure.   

Method

The Health Experiences Research Group will conduct 40-50 interviews with people who have Alport Syndrome. We will work closely with the funder Alport UK who are a leading charity in supporting people with Alport Syndrome. 

How this could benefit patients

A section dedicated to Alport Syndrome on Healthtalk.org will provide an online resource and toolkit for people with Alport Syndrome and their families, the general public and health care professionals. Findings from this study may lead to new developments in the diagnosis and treatment of Alport Syndrome, especially for children and young adults. This resource will provide practical and emotional support and information for those people recently diagnosed, through hearing and seeing others’ experiences. 

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