On Sunday 26th March, Kidney Research Yorkshire joined the celebrations of Holi Hai at the Bradford Hindu Temple to raise awareness of kidney health and research for World Kidney Day 2023.
Along with support from charity South Asian Health Action (UK) charity (SAHA), Bradford Hindu Cultural Society, Leeds Teaching Hospital NHS Trust (LTHT), Bradford Teaching Hospital Foundation NHST Trust (BTHFT) and NIHR MIC (Leeds), the event started with prayers for wellbeing and peace led by Haridas Shukla Chaplaincy team from LTHT.
This was followed by an information session including talks from a variety of kidney specialists including doctors and researchers, patients sharing their stories about living with kidney disease and also specialists in health inequalities, especially within South Asian communities.
The event was delivered in both English and Hindi, highlighting the importance of kidney health, research and organ donation in the South Asian Community. Dr Sunil Daga from Leeds (LTHT), explained the silent nature of the disease and that those with South Asian backgrounds have a high propensity to kidney disease, affecting up to four times more than those from white backgrounds, at a younger age and with a faster progression. He also emphasised the need for participation in wider research by the community. He made a call for action to the community as kidney disease is set to become one of the top five killers and early loss of human lives by 2040.
Inspirational talks were given by patients, including Niketa, a committee member of Kidney Research Yorkshire and Amar, a community ambassador from SAHA. Niketa shared her story of kidney disease, and how she had to start dialysis when her kidneys were affected, and she was told that she would need a transplant at some stage. She described the impact of kidney disease on her personal, financial and professional life, caring for her 10 year old daughter. Luckily, her kidneys started to regain function and she no longer requires dialysis. Niketa knows that this may not last forever, and at some stage in the future she may need to go back on dialysis and ultimately require a transplant.
Amar shared his personal story of kidney disease, from his kidneys failing from an early age and moving onto dialysis – which involved spending up to four hours attached to a dialysis machine 3 times a week at a dialysis unit, then onto home dialysis, which although meant he didn’t have to travel for his treatment, is still incredibly restrictive. Amar went on to have a transplant through a living donation from his partner and is now able to live a full life, back to being active and able to do all the things he could before his kidney disease diagnosis.
Dr Tarun Bansal, a kidney consultant from Bradford (BTHFT) talked about the importance of kidney health and information specific to the Bradford community. Kirit Mistry, Chair of SAHA shared information about the work of the charity, and encouraged everyone to get involved in supporting health research and how they work to improve health inequalities across the UK.
Ratish, a patient himself but also a PPI representative in NIHR study shared his thoughts on why involvement in research is important and how NHS/NIHR supports participation and reimburse patient and public contributions. He emphasised the importance of inclusive research.
The event was interactive with number of questions around kidney health, living kidney donation and how community can contribute to their health and involvement in research. Around 200 community members attended the session and more during the cultural celebration. A panel of invited guests (Dr Hanif Ismal – PPIE lead from Leeds Teaching Hospitals, Prof Mahendra Patel OBE – national Pharmacist leader, Rakshith – 16 year old kidney transplant recipient and other speakers) answered questions and reiterated importance of kidney health awareness and research participation.
The key messages from the day were to raise awareness of kidney disease, the importance and impact of organ donation, including living kidney donation, and the need for more people from South Asian backgrounds to discus their organ donation wishes with their families. Mr Kamal Sharma, from Bradford Hindu temple closed the event thanking for wonderful community engagement even on health and expressed strong support from the community for further such events. The information session was followed by a wonderful lunch provided by the Hindu Cultural Society of Bradford, and then the celebration of the Holi Festival of Colours with the throwing of colourful powdered paint creating a vibrant scene with lots of dancing and fun! Holi Hai celebrates the coming of spring and the joy of friendship.