Adding my voice to the charity’s research direction
Having been diagnosed with nephronophthisis (a disorder that impairs kidney function) when she was just five years old, Megan Cairns has grown up with first-hand experience of what it’s like to live with kidney disease. So it makes sense that she now volunteers with Kidney Research UK to help share her knowledge and her experience with others to help progress research.
Her diagnosis was a shock for her parents, Megan, 26, who comes from Lisburn in Northern Ireland says, “By the time doctors realised what was wrong with me, I had complete renal failure. I was on peritoneal dialysis for 24 hours a day, before going down to 12 hours a night. I was in hospital for five or six weeks and didn’t leave until I was stable and my mum had learned how to be my carer. She gave up work to look after me and did my dialysis at home every night.”
“I was on dialysis for seven years and then on my 12th birthday I got the call for my kidney transplant. The operation went well and I was only in hospital for two weeks but I had to isolate for three months when I got home to prevent infection. My mum stayed at home with me and we always say now that it prepared us well for Covid!”
But while her operation was very successful, Megan went on to encounter some health complications later when she was studying for her degree in pharmaceuticals. “I was fine for several years after my transplant but then unfortunately during my undergraduate degree I was diagnosed with sepsis. So that took quite a toll and I’m actually still on preventative antibiotics for that as every time I was taken off antibiotics, the infection came back.”
Using own experience to help others
Given everything she’s been through, Megan, who is currently doing a PhD at the School of Nursing and Midwifery at Queen’s University in Belfast, is keen to use her experience to help others. So as well as working on her PhD, which is looking at sexual dysfunction in people with chronic kidney disease, she finds the time to be a research network volunteer for Kidney Research UK. This involves having a say over which areas of research will be most beneficial to patients and contributing to decisions around which research projects the charity should fund.
She explains, “An email goes out to volunteers to say that grant applications need to be reviewed and we’ll read through the application. There’s a questionnaire at the end which you fill out to say if you think the research will be beneficial and asking if you think there’s enough patient input into how the research project will run.”
Megan admits that volunteering actually saved her during lockdown as it added some much needed structure to her day. She says, “During the pandemic I wasn’t working and I isolated a bit longer than I needed to because of my health issues. I was quite anxious at the beginning and struggled a little bit with my mental health. My role at Kidney Research UK gave me a purpose and a reason to get out of bed in the morning.”
But being a research network volunteer is not all Megan does. On World Kidney Day this year she hosted an event in her students’ union to educate her peers. “I was able to teach students about kidney disease, raise awareness and bust some myths and encourage people to donate their organs,” she says. “We had 20 people sign up to become organ donors.”
Talking about what motivates her to volunteer, Megan says, “Obviously having been through my own medical journey, I saw the struggle I had and that other patients had. I want to progress kidney research and the knowledge that’s out there. The more we know the better the treatment and support can be for patients, and ultimately it’s all about improving things for patients.”
Inspired to give back
Megan said she’s also been inspired by her parents, who have done their bit for charity since she became ill as a child. She says, “My mum and dad did a massive fundraiser after I was diagnosed with nephronophthisis and held a “fun day” at our house. It involved raffles, food and games and raised thousands of pounds for the renal unit at our local hospital in Belfast. So I was thrown into that straight away as a young child and it encouraged me to carry on.”
“If I know anyone doing the Belfast marathon or anything like that, I’ll encourage them to do a JustGiving page for Kidney Research UK,” she adds. “And I’ll always refer people to the website if they have the capacity to volunteer so they can see what roles are out there and what they could do to help as it’s such an important cause.”
To find out how you can get involved, please get in touch: email [email protected] or visit our volunteer webpage for more information.
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