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Twins who lost their mother while she waited for a kidney donation are talking about their family story in hopes of dispelling the “taboo” around the subject. Aneesa Chaudhry, from Brighton, and her identical twin Aisha, who now lives in Germany, lost their mother Annsa at the age of 50, having waited for a kidney donation for a decade. At 39, doctors discovered that neither of Annsa’s kidneys were working as they should.
Annsa spent ten years on dialysis while waiting for an organ donation. Dialysis is a procedure to remove waste products and excess fluid from the blood when the kidneys stop working properly. It often involves diverting blood to a machine to be cleaned.
The twins also had two brothers, and all four were of school age at the time. Aisha said: “We were 15 when she became unwell. We all tried to keep things going as best we could.
My parents were a traditional Asian couple, they really adored each other and loved their family. “She was always thinking about others and just used to say her time would come.” Aisha's book Family Matters encourages people to have conversations with their families (Image: Supplied) Annsa was told that the chances of finding a suitable kidney donor were “not very good”.
Although the family wanted to be living donors, none had the right tissue type. She said: “We were told it would be more difficult to find a donor with a South Asian background. It’s not just the blood group, but the tissue typing.
The pool of availability for people from the South Asian community is not big. “People in those communities are either not coming forward or don’t know about it. It’s not talked about, it’s a taboo topic.
If someone dies, their family might not give consent for their organs to be donated, even if they did. It’s a family matter. “We all really believed she would get her kidney.
At the end of the 10 years, after being in and out of eight hospitals, time ran out and she passed away.” Aisha and Aneesa are now the age their mother was when she died. Aisha was invited to parliament in 2023 (Image: Supplied) Aisha's book Family Matters is a memoir about what their family went through.
It was endorsed by the donor research team at Brighton University, who invited her to have a book launch at the university and speak on a panel on the topic. Aisha said: “The aim of my book is to get people to talk to their families and have that discussion about what their wishes are, so they don’t have it changed after they die. “In 2023 I was invited to parliament.
Most people in the room were donor recipients but I was the only one whose family was not successful. We don’t talk enough about how difficult it can be for people and their families while they wait and it’s not always a happy outcome. “I want to raise visibility about the topic.
People should be selfless not selfish – if it doesn’t hurt you and you’re well, then consider it. “I’m so happy for people that are recipients – they get that second shot, that lease of life – it’s not perfect but sure as hell different to being attached to a machine.”.
