ANCA vasculitis diagnosis

Matthijs: "Lara had always been a healthy, happy girl but in April 2025, aged 12, she started getting headaches. They were infrequent, once every two or three weeks and lasting a day or so, but through the summer it got worse and she started vomiting too. The GP thought it might be migraines or hormones, which we assumed was the case as well.

"After Lara threw up on her first day back to school, we went back to the GP and Lara’s blood pressure was really high. We were told to go to A&E that same day, where they did blood tests and urine tests that showed Lara’s kidneys weren’t functioning. That evening, A&E got in contact with the kidney department at Evelina London Children’s Hospital, and we were told to go for further tests immediately. They did a kidney biopsy, and Lara was diagnosed with ANCA vasculitis and kidney failure. Her body was basically poisoning her, and we were told that she would need dialysis as soon as possible.

"The diagnosis has changed everything for us as a family. I think I was in denial when we were at the GP and in A&E. The moment it hit for me was when Lara asked one of the doctors at Evelina if she would need a kidney transplant. I instinctively started to tell her that no, that wouldn’t be necessary, and the doctor corrected me and said, actually, yes, she probably would. That was when it started to sink in that something was really wrong."

Starting dialysis and Lara’s stroke

Matthijs: "The kidney team needed to put in a catheter to start peritoneal dialysis (PD), but there were some delays before they could carry out the operation. The doctor told us that they would have liked to have waited longer between the catheter operation and dialysis, but they had to dialyse her straight away because she was so ill. To be honest, it is hard to try and remember it all, it was a blur.

"The dialysis started working but Lara had to stay in Evelina for weeks to get better. In October she started coming home occasionally, but one weekend, her blood pressure began spiking up and she had a really bad headache and was throwing up. We went to A&E in our local hospital, where she soon lost consciousness because of the high blood pressure and said before she passed out that she could not see anymore. She was rushed into intensive care at Evelina by ambulance and then put into a medically induced coma for four days to protect her brain.

"When she was woken up from the coma, she had lost her vision and her movement on her right-hand side. She was really confused and didn't know what was going on. It was so frightening for us all. She started rehab – physio, language therapy, occupational therapy – and she regained her vision after around two weeks, and had to learn to stand, walk and write again in the months following.

"She was also moved back to the renal ward and had to continue with dialysis. In December 2025 she finally came home again. She has stabilised and has made a really good recovery from the stroke. She started going back to school for an hour a day and by summer 2026 she was able to be in school for longer at a time. She now dialyses at home, too.

"Before Lara’s diagnosis, we used to travel a lot, and her mum and I were busy with work. Our daily routines have changed, we are more home-bound again because of PD, and I have taken a different job that is less stressful. We have had to adjust our house for dialysis too, as at any time we have well over 70 boxes of dialysis fluid stored in our house, plus a significant amount of medical supplies! It has impacted all aspects of our life."

Dialysis from Lara’s perspective

Lara: "I don't particularly enjoy PD, but it keeps me alive… Sometimes I get really bad drain pain in my tummy because it’s pulling fluid out of me. The nurses try to help me enjoy dialysis as much as I can. They made me name the machine, so I called it 'Nancy the dialysis machine' because she is one of my favourite characters in Stranger Things.

"I do PD for 12 hours every night. I’ll brush my teeth and get ready, get into bed and mum primes the machine. Mum and Dad do my observations and then I get connected and start at around 8pm. The machine is quite loud, but I am used to it now. It’s annoying when it alarms, but I know what to do.

"I take my medication, and I watch some telly and I sleep and I stop the dialysis at 8am in the morning.

"I get morning sickness now; most mornings I am sick and I vomit a lot. In the morning I don’t feel very good, it’s only after I fully wake up that I feel okay. Sometimes, if I have a really bad night, I can still feel aches the next day but other days I feel the PD has worked well and pulled out a good amount of fluid. I weigh myself in the morning and evening to track how much I have drunk."

Struggles living with ANCA vasculitis

Lara: "It is really hard to stick to my fluid restriction, but I have to because it is dangerous. If I have too much fluid it builds up in my body and it can cause damage to my lungs, and my blood pressure goes up. The last time that happened I had a stroke. Sauces count, soups count, yoghurt and fruit counts. I have ice cubes because they last longer and they’re nice and cool.

"It’s hard to go to parties because I have to take medication before I eat, and everyone there can drink what they want but I have to measure my fluids. I feel a bit left out. It is hard for my friends to understand my kidney disease because it is complicated. I have psychology sessions at Evelina, and I made a booklet about my condition because I struggle remembering everything. I show it to friends and teachers to explain, but even then, it is still hard for them to really understand.

"I can’t write quickly at school because of my stroke, so it is hard to copy things off the board and I have to rush. Because I haven’t been there for almost the whole of Year 8, I feel like I have missed out on so much. There was a pool party that I couldn’t go to because of my catheter and at the beginning of Year 8 there were auditions for our school play, but I was admitted to hospital. I did manage to watch the show, and it was nice to support them.

"I am on a lot of medication, around 16 tablets a day. I have medication in the morning, lunch, dinner and evening. Last year I didn’t know how to swallow a pill, so I had to have liquid medication and it was disgusting! I went to ‘pill swallowing school’ in hospital though, so I learnt how to do it and some I can even swallow dry now. Some of the medicine tastes disgusting though – one of them is like really gross bananas."

Diet and the Kidney Kitchen

Lara: "I know what to watch out for when I’m looking at foods, things like checking salt and how much protein and potassium I can have in a day. I can have two handfuls of low potassium fruit a day and two handfuls of protein a day. Strawberries are my favourite and after Evelina, I was told to eat cream to put weight on, so I had strawberries and cream! 

"I’ve also been making Kidney Kitchen recipes. We’d been looking for food I can eat as a kidney patient and exploring a lot, and there are lots of foods on the Kidney Kitchen website that do match with my diet. I like to bake, and I sometimes make dinner for my family. I made the Kidney Kitchen pineapple upside down cake the other day and it was good, though I think I must have done something wrong because it came out of the oven a bit flat!"

Life now and raising awareness

Lara: "At the moment, I feel annoyed and frustrated with my kidney disease. It has put my life on a pause when I could be doing other things."

Matthijs: "My wife and I felt guilty because we missed the initial signs of Lara’s kidney disease, we thought she was just having migraines. Ironically, after Lara was diagnosed, Kidney Care UK’s #BloodyAmazingKidneys campaign started, and we saw the billboards that said, ‘90% of people don’t realise they have kidney issues’ and it was exactly the same with Lara. If we had caught it earlier, it might not have been when she was already in kidney failure… I get sad thinking about it, so Kidney Care UK building awareness with their campaign is something that will help everybody. You hear about the signs of heart attack, or lung problems, but nobody really knows what to look out for with your kidneys and the implications are so vast at stage 5 CKD.

"We first found out about the charity and what Kidney Care UK does from Evelina, from the nurses and when chatting with other parents. We have signed up to get Kidney Care UK emails and watching the YouTube videos of other children living with kidney disease have helped Lara. We use the infoKID website for parents of children and young people with CKD, cook recipes from the Kidney Kitchen and get Kidney Matters magazine delivered."

"At the moment, we are in clinic every three weeks or so, plus injections every week for haemoglobin levels. Lara still has issues with her kidneys, and she has treatment for the ACNA vasculitis. Before a kidney transplant can happen, the ANCA vasculitis has to be under control and that usually takes two years of treatment. We are almost a year in now, so we are starting transplant discussions in September. Hopefully, after Lara has a transplant things will get back to normal. We have a wish list of things to do then, everything from places to go to drinks to drink again!

"For my wife and for me, kidney disease is a constant worry. It changes everything and we have had to replan our life. We are just immensely grateful Lara is still here; we almost lost her twice. What I would say to other parents, if your child has kidney disease, is that there is a lot of help available. Work closely with your kidney team, talk to other parents to get advice or just to have a moan! It is physically and mentally tough and kidney disease has a big impact, so get support and help."