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Saving lives in honour of a much-loved matriarch

25 October 2023

Peer educator-in-training Anushka Loomba is set to help communities in London take control of their own kidney health. She is volunteering to do this vital work with Kidney Research UK as a tribute to a much-loved grandmother who spent her last 18 years of life on dialysis.

Anushka was very close to her husband’s grandmother Usha Ashoka, who sadly died in July 2023. Usha had Alport syndrome, a rare genetic disorder which affects the formation of the kidney’s filtration system and is the second most common cause of inherited chronic kidney disease (CKD).

Family motivation to get involved

At least three generations of Usha’s family are known to have inherited the defective Alport gene – including Anushka’s husband Upanishad, who had a successful kidney transplant in 2014. Fortunately, their son, who was born in April 2023, has not inherited the gene.

“Usha went through so much as a result of kidney disease, but she just got on with her life,” says Anushka.

“I wanted to do something to honour her so when I heard about Kidney Research UK’s Hidden CKD project, I just knew I needed to get involved.”

Family picture of granddaughter with her grandmother
Anushka (right) with grandmother Usha and husband Upanishad.

About the project

The project focuses on trained peer educators (community kidney champions) speaking with Londoners from African and Caribbean communities about kidney health and encouraging them to use a specially designed app to test their kidney health. People are approached in places of worship, in community centres and through community groups.

Led by Dr Kate Bramham, consultant nephrologist at King’s College Hospital and senior clinical lecturer at King's College London, it aims to raise more awareness about how silent kidney disease is until it is advanced, and how early checks and treatment can help prevent and manage it.

“My role, as a peer educator, is to speak to African and Caribbean communities where the prevalence of kidney disease is likely to be higher – as in South Asian, communities – and empower those communities with the knowledge that they need to really take control of their own health,” says Anushka.

“I’m a South Asian, and I know that high blood pressure, diabetes and obesity is very prevalent in my community and those are all risk factors for kidney disease.”

“We need to ensure that people really understand what the signs of kidney disease are, what the prevalence is, how it manifests, and what can be done to prevent it or manage it.

“I think in some communities people don’t like others to know they are unwell, so there is that aspect of it as well – removing the stigma around people having these chronic diseases.”

Combining professional interest with vounteering

A trained biochemist, in her professional life Anushka is working with a US company to create a new model for clinical trials, which aims to give more patients more choice and access to research, whilst increasing participant diversity.

“It was through my work that I came across a webinar that Kidney Research UK’s health equalities programme manager Neerja Jain was actively driving diversity in research,” says Anushka.

“I reached out to her, arranged to meet and when she told me about the Hidden CKD project, I knew I had to get involved – especially as our grandmother only discovered she had Alport syndrome after doctors investigated her really high blood pressure.

“I think one of the most amazing things about her was the fact that she went on dialysis at 70, bearing in mind she had spent many years caring for her son (my husband’s late uncle Priya) who had kidney failure. He had dialysis at home for many years and she was the one who used to connect him to and from the machine.

“I saw my husband go through dialysis, three times a week for several months, before he had his transplant and it’s not easy. While the whole process is going on, your blood pressure can fall, making you feel unwell and then afterwards you can feel extremely nauseous and tired. Your diet and fluid intake are severely restricted, as is your ability to travel without making special arrangements.

“Our grandmother witnessed all of this with her family and then she got renal failure and relied on dialysis to keep her alive for 18 years.

South Asian older lady wearing a pink cardigan a chritsmas cracker crown hat.
Usha Ashoka who spent 18 years on dialysis

“She faced many distressing complications, including continuous cramps, severe joint swelling, fluid retention and, as a result, frequent falls and hospital admissions. So much of her life was affected and restricted – even down to her using the smallest mugs we could find for her because we knew she could never enjoy a full cup of tea.

“Despite everything, she remained full of love, laughter and courage, and extremely grateful for the gift of dialysis. She rarely complained but instead spent her non-dialysis days cooking up a storm for her friends and family.

“If I can do anything in her memory to help prevent people from getting kidney disease or make life even the tiniest bit better for other kidney patients, I will be really happy.”

Hear from people living with kidney disease

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