Beating the odds – volunteering to help the bigger picture
Jelina Berlow-Rahman’s story is so extraordinary that sometimes even she can’t believe what she’s been through. The 44-year old award-winning human rights lawyer, who had a kidney transplant in 2009, says, “When it’s your own story, you live it, you breathe it and it becomes normal to you. When I speak to people I’m very open and frank about what’s happened to me, but when I see the impact it has on others, it makes me feel emotional myself. I realise how much I can help by telling my story.”
Jelina was diagnosed with lupus at 17 years old and by 25, her kidneys had failed. But that didn’t stop her from completing her law degree and she even managed to start her own law firm in Glasgow whilst on dialysis. ““Initially I kept a lot about my illness hidden, partly because of cultural reasons of not wanting to be rejected by the Asian community because I was ‘broken’. I just wanted to be normal, but there would be days when I would go off grid, not responding to friends, being stuck in bed, with aching joints and flu-like symptoms and feeling so low, those days I just wanted to hibernate from the world.”
But there was no way of hiding it anymore when Jelina ended up seriously ill with pancreatitis in 2007 and was hospitalised for three months. She lost all her hair, went down to five stone and had to relearn to walk. However, by the time she was 30, Jelina was offered a kidney transplant and it was after this life-changing operation that she started to volunteer with Kidney Research UK.
Motivated to give back
She says, “I started fundraising for Kidney Research UK after my transplant. It was my way of giving back because I found it really difficult emotionally and psychologically to say thank you to the donor family who had lost their loved one. I raised money at first by doing one of the charity’s Bridges Walks and then on my kidney transplant anniversary, I would do an event with family and friends at my house and raise money through that.”
Helping to raise awareness
“The next stage was when I was asked by the charity to speak at schools, I accepted this immediately,” says Jelina. “I spoke at a school in Edinburgh about my story, showing the stages of my illness using photographs I had taken over the years. I was overwhelmed with the reception I received from the children who listened intently and had so many questions. This gave me the confidence to get more involved with talking to the media, other schools and well as speak at several conferences. I did a talk for a peer group educator’s programme, too. I was happy to do anything, as long as I was educating people about the importance of research.”
“I also tried to raise awareness among ethnic minority groups about organ donation and carrying donor cards,” she says. “But most recently I would say that my volunteering involves being part of the lay advisory group (LAG). This involves me giving a patient's perspective to researchers.”
Researchers are extremely grateful to hear from people like Jelina and she found that she got a lot of positive feedback after attending the charity’s two-day annual research conference, Driving Discoveries, last year. She says, “They said it meant a lot to them as it reminded them of their purpose and end goal. It was nice to hear that and to see their passion in terms of how they’re trying to find a better way of dialysing or finding medication that has less impact on the body.”
Beating the odds
Jelina’s story is so powerful that she managed to help raise a whopping £55K for Kidney Research UK in just one night last year, when she attended the BioIndustry Association Awards in London and gave a talk inspiring people to donate money. She says, “I showed them a photograph of me when I was at my most ill and they couldn't believe I’m the person in the picture. I went on that journey of nearly dying and then going on to have a child. I had my daughter, Aliyah in 2016 even though I was told I couldn’t have children. I’ve beaten the odds, basically.”
Jelina, who lives in Glasgow with her daughter, 7, and her husband Mathew, explains that her motivation behind volunteering has changed over the years: “My volunteering started being about myself, but the more I learn, the more it’s become about the bigger picture and the impact that kidney disease has on the NHS. It’s about raising awareness that if you do have a known risk factor for kidney disease like diabetes in your family, you should go and get tested. Because you’re more likely to have diabetes if it’s in your family, which could then lead to kidney failure. It’s something that has to be done. It’s not a case of seeing what happens.”
She adds, “When I was visiting the schools, I could see that the children were interested and I think it’s important to know that it’s not just things like cancer that need research. Kidneys are a huge issue too. Cancer research gets a lot of publicity and you see it everywhere. But the younger generation wants to help so we should be targeting them too.”
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