Mum joins our London Bridges Walk after decades with nephrotic syndrome
When Emily Fender was diagnosed with nephrotic syndrome (NS) at the age of 8, she was told it was likely she’d outgrow the kidney disorder by the time she was in her late teens. But at 35, Emily still has the syndrome and now finds herself in the position of being something of a medical anomaly. She says, “There aren’t many of me around. Doctors don’t really know what to do with me.”
Walking to support research
Emily, who lives in Hampshire with her husband Lynden and her sons Charlie, 6 and Henry, 2 is keen to support more research into NS, and is taking part in the London Bridges Walk on the 16 July – where she’ll walk seven miles with her mum Karen, and her younger brother Sam, 25 – in order to raise money for Kidney Research UK.
“I was originally doing the walk just with my brother. And then my mum caught wind that we were doing it and straight away, she said, ‘I want to do that too!’ I think she likes the idea of being able to pay something back for the support that we’ve had over the years. I am so looking forward to meeting other patients and their families on the day and I know there will be a brilliant atmosphere.”
Kidney disease diagnosis
Talking about how she came to be diagnosed with NS where the kidneys leak protein into your urine, Emily explains, “I had really bad ear infections for a good few months when I was 8. I was treated continually with antibiotics. That all cleared up but then my skin started to change to a slightly more yellowy colour. And then one day I was just violently ill in the morning and puffed up.”
Emily continues, “I had various tests done in hospital and after a few days, they diagnosed me with nephrotic syndrome. Doctors often say that it’s something that you’ll see in young children and often there's been something that might trigger it such as consistent infections. Mine isn’t genetic, it’s idiopathic (meaning the exact cause is unknown), and they think perhaps my ear infections are what triggered my body to react the way it did.”
Emily, who trained as a children’s nurse and is now a health visitor, didn’t respond well to the treatment options at first. She says, “Originally I was put on really high dose steroids, which didn't seem to help. So I was relapsing quite frequently for a good few years after my diagnosis while they were trying to find the right treatment. From the age of 8 to 11, I spent a lot of time hospital. I guess that's probably what inspired me to become a children's nurse!”
Emily says, “When your kidneys leak too much protein, it makes you really puffy. And I would get really tired, but I didn't feel like it was too bad. The nurses would say, 'you're really quite poorly’ but I never felt like one of those really sick children. It was just normal for me, I guess.”
She adds, “I had IV infusions of all sorts of things because my body was depleted and then they put me on a medication called cyclosporin (an immunosuppressant). And that seemed to do the trick. To this day, it's worked really well. When I relapsed, I would need the steroid prednisolone and cyclosporin to get me back to where I needed to be. But luckily, it's not steroids I’m on now, because they're not particularly fun to take.”
In terms of a treatment plan for the future, Emily says, “Doctors have trialled taking me off the cyclosporin on numerous occasions. But I've always relapsed.”
Having stayed on the drug whilst she has had two children, Emily anticipates it may be time to try coming off again. She says, “I feel like we need to try. I think this is going to be the last time. If it doesn’t work, the long term plan is to be on a low dose of the medication. I just need to keep having my levels checked as cyclosporin can be toxic and it could have an impact on my kidney function.”
Hope for research
She says, “I don’t know what the future holds for me and you never know what’s round the corner. But the more you can do to help and support Kidney Research UK, the better it is for everyone. I know that there has been new research recently supported by Kidney Research UK, which has provided important new clues into idiopathic nephrotic syndrome and how it can be treated, and that makes me really happy.”
Have you been inspired by Emily's story?
Join Emily at London Bridges Walk and you too can help fund research to transform treatments for people living with kidney disease.