Families back Kidney Care UK campaign to help save more lives

Kidney Care UK launched the campaign after research showed that over a quarter of people (27%) are unable to identify the main symptoms of chronic kidney disease (CKD), which affects more than 7 million people in the UK – a million of whom are unaware they even have it.

The findings could be even more significant for the UK’s Asian community – high blood pressure and diabetes are two main causes of CKD – and there are high rates of both of these within some ethnic minority groups.

The most common signs of CKD are: cramps, itchy skin, dietary changes (food tasting different to how it does normally), nausea and/or vomiting, exhaustion, changes to your wee and swelling of your ankles/legs or face. 

In response to this, Kidney Care UK is urging people to take their five minute online Kidney Health Checker4 to understand their risk and take action to prolong their kidney health. 

The campaign is being backed by patients and their families all across the UK including former paramedic, Mohammed “Izzy” Islam, from Yorkshire; entrepreneur and mum-of-two Hurm, from Manchester; and a former lawyer from Reading, Aisha Chaudhry, who have all experienced chronic kidney disease either directly or through a close family member.

Izzy, 48, was involved in the development of the campaign. He is at Stage 5, which is classed as kidney failure and is back on the transplant list having received a kidney which stopped working after seven years. 

There was a chance to spot his kidney disease at least 15 years before he was informed that he had it. He currently receives in-centre haemodialysis three times a week, for four hours at a time at his local hospital. Izzy was diagnosed in 2012, after a routine doctor’s appointment showed he had elevated blood pressure. 

He said: “Around 2012 when I was about 36, I went to the doctors and they checked my BP. It was slightly high so they put me on tablets and told me to come back in 4 weeks. I did and my BP was even higher. 

"They did a blood test and called me back in a third time and said my creatinine levels were a little elevated and referred me to see renal consultant. They did a biopsy, and took more bloods. 

“Meanwhile, I went back to work (as a paramedic), and was pulled up outside patient’s house when I got call from St James in Leeds saying to come in straight away.

"My creatinine was higher, but I thought it was just being cautious. I thought how bad can it be? So I finished my shift and went to hospital late night, where I was told my BP is more abnormal - my creatinine was over 400, and my kidney function was down to just 18%. 

“I was stunned - I felt normal. The doctor asked if I was tired, but I was working 12 hour shifts and nights, so I put it down to that. The signs were there, but it was too late when I found out.

"I went on dialysis and thought it would mean life would more or less go back to normal. I was a bit shocked when it didn’t. It was depressing to see a bag hanging out of my body, and I never got a good night’s sleep.

“Then I received a transplant in 2013. Transplants are a tricky subject at the best of times because of the additional dimension of my faith. There’s a lot of confusion about whether or not transplants are permitted within Islam and I didn’t want anyone else to suffer. So I spoke with an Imam (Muslim faith leader) and he said, “Which religion tells you not to save a life?” 

“I got my kidney, went back to work, was able to go out with my family, go on holiday, and I wasn’t fatigued all time. Even the colour of my skin changed after I got my kidney! I am grateful for the gift, but sadly it also failed after about 8 years and ended up back in hospital.

"It was horrifying, my weight went from 82kg to 152kg. I couldn’t get my trainers or even my pants on. I ended up in hospital during covid, it was horrendous, dialysis every single day.”

Speaking about the campaign, he said:  “That’s why I think this awareness campaign is a fantastic idea – we need something bold that will make people pay attention because not enough people are aware of the signs they their kidneys might not be working as they should. I’ve found this is especially true within the Asian community, but as the research shows, it’s the same across Yorkshire and even the UK. 

"I would urge everyone, especially people who are more at risk because of high blood pressure or diabetes, to get themselves checked out, just so they can be aware of what they should and shouldn’t be doing to protect themselves and their kidneys.”

Busy mum, Hurm, 47, agrees. Diagnosed with a genetic condition, polycystic kidneys, when she was just 28. She says: “I lost my aunt to the disease when she was younger than I am now, and my Nan also died of complications linked to her CKD a few years ago.

“For me, living with CKD has meant further complications because of cysts on my liver. But it’s not just me that this affects. During both of my pregnancies they were extra vigilant when it came to checking my daughters’ kidneys were growing properly. I was also admitted at one stage because I was at higher risk of preeclampsia, but thankfully the pregnancies both went well.

“Now I’m on a new medication that helps me to manage the disease, which I will have for the rest of my life – but one of the biggest things I’ve noticed that’s made a difference to how I feel health-wise is going to the gym.  

"I’m hoping that the combination of the medication, drinking more water, and exercising will mean it’s a long, long time before I even have to think about going on dialysis. And of course all of this means I am much more conscious about what we eat and drink as a family, and especially when it comes to my two daughters.

“That’s why I think it’s really important that more people know what the symptoms of CKD are, just in case there’s something there that they should get checked out so they know to drink more, eat less processed food and avoid things like ibuprofen, if they’re at risk.”

Aisha, 48, a former lawyer from Reading, Berkshire lost her mum to kidney failure when she was still very young. 

Aisha said: “There really needs to be a national conversation about Chronic Kidney Disease. Not enough people are aware of the symptoms – and while individually they might not seem that significant, when you put them together it’s a sign that our body is telling us something really isn’t right.

“It’s especially an issue for people who have diabetes or high blood pressure – and while we’re all affected by things differently, I do know that these issues are prevalent within the Asian community especially. 

"So I’m encouraging everyone to recognise the symptoms and to use Kidney Care UK’s online checker to see if they might be at higher risk and to get seen by their GP if needs be.

“I’m coming up the age now that my mother was when she passed away and there are so many things she’s missed out on and times when I just wished she was here to see or so I could talk to her about the things happening in my life. Sadly, so many of my childhood memories are linked to visions of my wonderful, kind and supportive Mum being attached to her dialysis machine.

“Like Izzy, my Mum needed a transplant – and I just don’t think there is enough discussion about this within the Asian community, which is why there is a shortage of kidney donors.”

Director of Policy at Kidney Care UK, Fiona Loud, said: “People with diabetes and high blood pressure are at increased risk of CKD – but not enough of them are being given an annual check to test their kidney function. 

"We want to see at risk groups screened as early as possible – because a delay in diagnosing moderate to advanced CKD -  even just by one year - means a 63% higher likelihood of kidney failure. And this has major implications for the people who then need invasive treatments, such as dialysis or a transplant, and is also a cost to the NHS that could be reduced with more preventative action.”

Kidney Care UK’s research also showed that:
• Over one third of people (35%) do not recognise that changes to your urine can be linked to kidney disease.
• More than three quarters (76%) do not realise that itchy skin is a sign of kidney disease.
• Similarly, (76%) do not realise that muscle cramps are a sign that your kidneys may to be working properly.
• Almost two thirds (64%) of people do not know that puffy face, or swollen ankles/legs is a sign.
• Only half of all people (50%) recognise that exhaustion is a sign.