We would like to warmly thank all those people who took part in the research and shared their experiences so openly and enthusiastically. Special thanks to Susie and Jules from Alport UK who have supported the project throughout.
Thank you to advisory panel members who took the time to give advice and feedback on the Topic Summaries. A big thank you to Sara Ryan for her support and buddying throughout; Thu Thuy Phan and Keira Pratt-Boyden for writing some of the biographies and checking transcripts, and Abi McNiven and HERG colleagues for their advice and support.
Richard Bennett - Interview participant
Steve Fry - Interview participant
Susie Gear - Director and Trustee Alport UK
Rachel Lennon - Senior Lecturer and Constant Paediatric Nephrologist
Thu Thuy Phan - Research Assistant, University of Oxford
Helen Salisbury - GP and medical director of project.
Jules Skelding - Trustee and Co-founder Alport UK.
Professor Neil Turner - Professor of Nephrology and Consultant Adult Nephrologist, University of Edinburgh and Edinburgh Royal Infirmary.
Professor Colin Baigent - Professor of Epidemiology and Deputy Director of Clinical Trial Service Unit (CTSU), University of Oxford.
Dr Sara Ryan - Senior Research Lead
Richard Stanton - Consultant Psychiatrist.
Professor Frances Flinter - Prof Frances Flinter is a clinical geneticist with a long standing interest in the genetics of Alport’s syndrome. She has counselled many of the families in the UK who are affected by Alport’s syndrome and her laboratory offers mutation screening looking for alterations in both the X-linked and the autosomal Alport’s genes.
Dr Omar Mahroo - Academic Clinical Lecturer and Consultant, Ophthalmology.
Karen Kanee - Alport Syndrome Patient
In memory of Anthony Whitworth
This project, funded by Alport UK, is dedicated to the memory of Anthony Whitworth. Anthony was diagnosed with Alport Syndrome when he was a boy after it was discovered he had hearing loss and haematuria. Despite having a full life with Alport Syndrome, the accumulation of work, health-related and personal distress contributed to him developing depression and reaching a crisis point. He committed suicide on 13th February 2014. His family love and miss him dearly.
His family would like to see more information and better mental health support for people living with Alport Syndrome and their families, to make sure they get the emotional support when they need it particularly at stressful times in life. They also think that support should focus on schools to make sure that children demonstrating early symptoms of Alport Syndrome don’t fall behind in education.
Looking back, Anthony’s family believe that Alport Syndrome never stopped him from having a full life: he had lots of happy times and experiences with his friends and family. His family feel that without the kindness of the family who donated the kidney Anthony may never have experienced the things he did and they are grateful for the time they had with him.
You can see extracts from our interview with his sister Karen, and mum and dad, Mary and Philip Whitworth throughout the project and see their full story here.