When Surma gave birth to her first child it should have been a happy, joyous time. But her daughter was born with nephrotic syndrome, which meant there were tiny holes in her daughter’s kidneys, leaking protein and making her ill.
A young mum herself, Surma faced weeks of worry as doctors struggled to diagnose the problem. She said: “We had no idea what was wrong and I ended up in A&E with Fatima as she was violently ill. She was in hospital for nine months. Every couple of days she had have an infusion, it really was touch and go. Even when she was allowed home we were constantly rushing back to the hospital because she had become breathless or poorly again.”
Two years later Surma gave birth to her second daughter, Aisha, who was also sadly born with the same kidney condition. It turned out that Surma and her husband were unwitting carriers of a gene which causes nephrotic syndrome. Fatima had a transplant before she was ten and Aisha in her teens had a kidney transplant. However, Aisha’s failed after four years and she is back waiting for a further transplant. Her wait is made all the more complicated by the shortage of donors from black, Asian and minority ethnic communities (BAME). People from those communities are at five times a greater risk of getting kidney disease than white people.
Surma now works with Kidney Research UK as a Peer Educator, encouraging community members to talk to their peers about the risks of kidney disease, how to look after themselves and about organ donation.
By educating people face to face, in the context of their own culture, language and religion, they are raising awareness among many thousands of people in a much more effective way. These volunteer champions spread the word at community events, to groups and to other people on a one-to-one basis. They also recommend and support lifestyle changes to help members of the community reduce their risks of developing kidney disease.
Kidney Research UK has so far trained over 160 Peer Educators through accredited training courses, which has resulted in over 3,000 new people signing up onto the NHS Organ Donor Register.
Surma's story continues. Aisha is still waiting for her transplant.
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