Alport Story: From Personal Isolation to International Collaboration for Kidney Care - WCN22-1320 скачать в хорошем качестве

Alport Story: From Personal Isolation to International Collaboration for Kidney Care - WCN22-1320

Alport Story: From Personal Isolation to International Collaboration for Kidney Care S. Gear1, R. Lennon2, S. Clarke3, P. Walker4, J. Zhang5, V. Fronterè6, A. Zealey Smith7, N.R.H. Hassan8, A. Jardine9, Y. Cai10 1 - Alport UK, Patient- Patient Advocacy Group, Oxford, United Kingdom 2 - Manchester University, Wellcome Centre for Cell-Matrix Research, Manchester, United Kingdom 3 - Alport UK, Patient- Filmmaker and Action Sports Enthusiast, Reading, United Kingdom 4 - Alport UK, Patient, London, United Kingdom 5 - China Alport Patient Organisation, Patient, Shanghai, China 6 - Associazione Sindrome di Alport- A.S.A.L Onlus, Patient, Siena, Italy 7 - Alport UK, Patient, Southampton, United Kingdom 8 - Alport UK, Patient, Manchester, United Kingdom 9 - Alport Syndrome Foundation, Patient, New York, United States 10 - 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, although recent research indicates the numbers may be higher. 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. Often more than one member of a family is affected, with no apparent ethnic, or geographical prevalence. Alport research shows early diagnosis and intervention can affect prognosis by delaying end stage kidney disease also relevant for ‘carriers’/women with AS who can develop high blood pressure and impaired kidney function later in life. 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 short video, with scenes filmed between 2020 and 2022 was written and produced in 2022 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. Many young people with AS feel alone, may be in denial about their condition, don’t realise the benefits of a healthy lifestyle, or forget to take their medication. In some cases, this has led to the loss of a precious transplanted kidney and significant mental health issues. 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 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. Our 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.