Aisha’s Story

After her mother’s 11-year battle with kidney disease, Aisha is determined to raise awareness of living kidney donation and encourage more people in South Asian communities to consider donating.

Aisha’s mother Annsa was just 50 years old when she died from kidney failure in 2001. Eleven years earlier, she was diagnosed with kidney disease and was told that she would need life-limiting dialysis treatment for the remainder of her life. Annsa spent ten years on the NHS transplant list waiting for a kidney, but never received the call that could have kept her alive. 

Being South Asian meant Annsa was always disadvantaged in finding a donor compared to white people living in the UK. Nearly 25 years after her death, there is still a shortage of Black and South Asian people on the NHS organ donation register, meaning people from these backgrounds wait longer on average to find a match for a kidney transplant. This is highlighted in a 2024 health inequalities report from Kidney Research UK. 

“After all these years, too little has changed, and many people in South Asian communities still feel uneasy about the idea of organ donation. This is for many reasons, including religion, culture, and not trusting healthcare professionals because of past scandals. I believe people are open to change, and I’m determined to drive conversations to address the barriers and increase the number of organ donors.”

South Asian Kidney Donation 

Aisha has taken several steps to share her message, speaking at events, appearing in media, and writing a book about her family’s experiences with kidney disease called Family Matters. 

Aisha says: “Lives are still being lost unnecessarily due to the lack of conversation and information around this topic. Even just speaking about living kidney donation and bringing it up in everyday conversation helps people to think about the subject and begin considering the immeasurable impact it may provide.” 

“Families are strong units in South Asian culture. If you want people to act, it needs to come from senior family members – the aunties and uncles. I hope my story starts conversations around the dinner table. 

“Language can also prove to be a barrier for some in South Asian communities for whom English is not their native tongue. Speaking or reading about sensitive topics like organ donation can prove difficult. That’s why I plan to translate my book to other languages like Arabic, Urdu, and Punjabi.  

“Within my religion, Islam, there are also misconceptions which prevent organ donation. Everyone is supposed to be charitable within Islam, which means it’s easy for people to donate money, clothes, or food. You can extend that further to donating an organ and helping someone live on. I believe if people put themselves in the shoes of somebody waiting for a transplant, or their family, that would help provide a different perspective.” 

Saving lives 

Aisha has already received positive feedback from people in South Asian communities, including her uncle.   

Aisha says: “My uncle, in his seventies, read my book and told his family he’d signed up to the organ donation register, which was amazing. My aim is to save the lives of people like my mum, and if just a handful of people consider donating organs because I’ve made them think about it, I’ll be elated. 

“When I look at the amazing work with modern technology and medical research, I hope that it’s equal for everyone. I hope everyone who needs support with their health has the same access to it. That will only work if people from all backgrounds come forward as organ donors and make their wishes clear to their families.”