Alport Story: From Personal Isolation to International Collaboration for Kidney Care
Submitted by:
S. Gear (Alport UK, Patient- Patient Advocacy Group, Oxford, United Kingdom), R. Lenno (Manchester University, Wellcome Centre for Cell-Matrix Research, Manchester, United Kingdom), S. Clarke (Alport UK, Patient- Filmmaker and Action Sports Enthusiast, Reading, United Kingdom), P. Walker (Alport UK, Patient, London, United Kingdom), J. Zhang (China Alport Patient Organisation, Patient, Shanghai, China), V. Fronterè (Associazione Sindrome di Alport- A.S.A.L Onlus, Patient, Siena, Italy), A. Zealey Smith (Alport UK, Patient, Southampton, United Kingdom), N.R.H. Hassan (Alport UK, Patient, Manchester, United Kingdom), A. Jardin (Alport Syndrome Foundation, Patient, New York, United States) Y. Cai (China Alport Patient Organisation, Patient, Beijing, China)
Summary
Alport Syndrome (AS) is an inherited condition that can cause kidney failure, deafness and eye abnormalities. Around 1 in 10,000 people are affected; potentially 750,000 people world-wide. AS particularly affects young people at an age when they are most vulnerable; typically starting with hearing loss in childhood, followed by declining kidney function in teenage years. Many patients will need a kidney transplant or dialysis as young adults. To improve kidney care and develop treatments for Alport Syndrome, Alport UK’s strategy is to engage the best experts around the world and bring patients (particularly young patients), clinicians, laboratory scientists and pharmaceutical companies together, in immersive workshops, to collaboratively develop new ideas to improve kidney care and treatments. This video, filmed between 2020 and 2022, was written and produced by young people living with Alport Syndrome, celebrates the highlights from the unique collaboration and international workshops, starting with the important focus to connect patients and reduce the feeling of isolation living with a rare kidney disease. Alport UK believes that all young Alport patients should have the opportunity to explore and understand the science behind their condition and be empowered by the expertise available. Encouraging them to take ownership of their condition builds vital confidence, resilience, and alleviates transition issues that arise during the move from pediatric to adult services. As a community they can mobilize public awareness and collectively drive research and innovation. Pioneering ‘pilot’ workshops in collaboration with the University of Manchester (funded by the Wellcome Trust) demonstrated the power of connecting young Alport patients with researchers, to help the patients understand various aspects of kidney care, dialysis and transplantation. These pilot workshops were then scaled and applied to the international workshops to engage a wider group of patients in kidney care.
The filmmaker patient, Sam Clarke, worked with Alport UK to set up the Don’t Wait Fund to encourage young people with AS to take up a new sport or hobby that gets them outside and to help them explore new activities to help them live their lives to the full and reduce the feeling of being defined by their kidney condition. The community and friendships grow stronger from the fun and shared learning together. Patients take responsibility for their condition and learn how to look after their precious kidneys. The young people are keen to connect with a wider group of countries and collaborate to help the 850 million people living with CKD have a brighter future.
