![Kidney_Research's tweet photo. Did you know, children on dialysis will on average miss more than 100 days of school per year?
Supporter Kathryn missed an entire year.
She was just 13 years old when she was rushed into Great Ormond Street hospital diagnosed with IgA vasculitis, a rare disease that is most common in children under 10 years of age.
Kathryn has shared her story with us to support our new report on the impact of rare kidney diseases in the UK, highlighting the effect on patients and families and to call for action to improve rare kidney disease care and outcomes.
“It [IgA vasculitis] came from nowhere but in the space of five months it caused my kidneys to completely fail which was a real shock. It massively changed my life. I missed a whole year of school in year eight. At that time, there was no social media, we had no mobile phones and I lived in a little village, so I lost touch with a lot of friends and that is really difficult when you’re 13 years old.
“I struggled physically and mentally. Having the treatments, dialysis and being hooked up to those machines was a lot to take in. I was on a high dose of steroids, put on weight and couldn’t fit in my clothes, which made me self-conscious. It really knocked my confidence.
“I’d got talking to a mum who has a little boy with a similar story to me, 20 years apart. He’s ten now but also was diagnosed with IgA vasculitis and within five months his kidneys had failed - the same as me in 1999. It became clear that the treatments and outcomes hadn’t really changed in 20 years, and I was shocked. So that spurred me on to do something about it.”
It's been one week since the launch of our new report 'Collectively common: the devastating impact of rare kidney diseases in the UK.'
Head to the link to read our 10 key findings and 14 recommendations: https://t.co/TNbsiyB3Vq](https://pbs.twimg.com/media/G2Vkm1bWAAA5k1b.jpg)
![Kidney_Research's tweet photo. Did you know, children on dialysis will on average miss more than 100 days of school per year?
Supporter Kathryn missed an entire year.
She was just 13 years old when she was rushed into Great Ormond Street hospital diagnosed with IgA vasculitis, a rare disease that is most common in children under 10 years of age.
Kathryn has shared her story with us to support our new report on the impact of rare kidney diseases in the UK, highlighting the effect on patients and families and to call for action to improve rare kidney disease care and outcomes.
“It [IgA vasculitis] came from nowhere but in the space of five months it caused my kidneys to completely fail which was a real shock. It massively changed my life. I missed a whole year of school in year eight. At that time, there was no social media, we had no mobile phones and I lived in a little village, so I lost touch with a lot of friends and that is really difficult when you’re 13 years old.
“I struggled physically and mentally. Having the treatments, dialysis and being hooked up to those machines was a lot to take in. I was on a high dose of steroids, put on weight and couldn’t fit in my clothes, which made me self-conscious. It really knocked my confidence.
“I’d got talking to a mum who has a little boy with a similar story to me, 20 years apart. He’s ten now but also was diagnosed with IgA vasculitis and within five months his kidneys had failed - the same as me in 1999. It became clear that the treatments and outcomes hadn’t really changed in 20 years, and I was shocked. So that spurred me on to do something about it.”
It's been one week since the launch of our new report 'Collectively common: the devastating impact of rare kidney diseases in the UK.'
Head to the link to read our 10 key findings and 14 recommendations: https://t.co/TNbsiyB3Vq](https://pbs.twimg.com/media/G2VklnJWUAAdSi2.jpg)
![Kidney_Research's tweet photo. Did you know, children on dialysis will on average miss more than 100 days of school per year?
Supporter Kathryn missed an entire year.
She was just 13 years old when she was rushed into Great Ormond Street hospital diagnosed with IgA vasculitis, a rare disease that is most common in children under 10 years of age.
Kathryn has shared her story with us to support our new report on the impact of rare kidney diseases in the UK, highlighting the effect on patients and families and to call for action to improve rare kidney disease care and outcomes.
“It [IgA vasculitis] came from nowhere but in the space of five months it caused my kidneys to completely fail which was a real shock. It massively changed my life. I missed a whole year of school in year eight. At that time, there was no social media, we had no mobile phones and I lived in a little village, so I lost touch with a lot of friends and that is really difficult when you’re 13 years old.
“I struggled physically and mentally. Having the treatments, dialysis and being hooked up to those machines was a lot to take in. I was on a high dose of steroids, put on weight and couldn’t fit in my clothes, which made me self-conscious. It really knocked my confidence.
“I’d got talking to a mum who has a little boy with a similar story to me, 20 years apart. He’s ten now but also was diagnosed with IgA vasculitis and within five months his kidneys had failed - the same as me in 1999. It became clear that the treatments and outcomes hadn’t really changed in 20 years, and I was shocked. So that spurred me on to do something about it.”
It's been one week since the launch of our new report 'Collectively common: the devastating impact of rare kidney diseases in the UK.'
Head to the link to read our 10 key findings and 14 recommendations: https://t.co/TNbsiyB3Vq](https://pbs.twimg.com/media/G2VkkZkXcAAAe4r.jpg)
Olivia
Online
Julien
@JulienMarro
Bristol Academic F2 / MPhil in child health / interested in discovery science, paediatrics research and all things kidneys
Bristol, England
Joined July 2015
375 Following
246 Followers
214 Posts
Resident doctors must be supported to undertake research not penalised. We sorely need more clinical academics to help drive medical treatments and patient care.
Instead UK academic residents have eroded pay + lose out again when opting for this career path. Make it make sense.
Did you know, children on dialysis will on average miss more than 100 days of school per year?
Supporter Kathryn missed an entire year.
She was just 13 years old when she was rushed into Great Ormond Street hospital diagnosed with IgA vasculitis, a rare disease that is most common in children under 10 years of age.
Kathryn has shared her story with us to support our new report on the impact of rare kidney diseases in the UK, highlighting the effect on patients and families and to call for action to improve rare kidney disease care and outcomes.
“It [IgA vasculitis] came from nowhere but in the space of five months it caused my kidneys to completely fail which was a real shock. It massively changed my life. I missed a whole year of school in year eight. At that time, there was no social media, we had no mobile phones and I lived in a little village, so I lost touch with a lot of friends and that is really difficult when you’re 13 years old.
“I struggled physically and mentally. Having the treatments, dialysis and being hooked up to those machines was a lot to take in. I was on a high dose of steroids, put on weight and couldn’t fit in my clothes, which made me self-conscious. It really knocked my confidence.
“I’d got talking to a mum who has a little boy with a similar story to me, 20 years apart. He’s ten now but also was diagnosed with IgA vasculitis and within five months his kidneys had failed - the same as me in 1999. It became clear that the treatments and outcomes hadn’t really changed in 20 years, and I was shocked. So that spurred me on to do something about it.”
It's been one week since the launch of our new report 'Collectively common: the devastating impact of rare kidney diseases in the UK.'
Head to the link to read our 10 key findings and 14 recommendations: https://t.co/TNbsiyB3Vq
![Kidney_Research's tweet photo. Did you know, children on dialysis will on average miss more than 100 days of school per year?
Supporter Kathryn missed an entire year.
She was just 13 years old when she was rushed into Great Ormond Street hospital diagnosed with IgA vasculitis, a rare disease that is most common in children under 10 years of age.
Kathryn has shared her story with us to support our new report on the impact of rare kidney diseases in the UK, highlighting the effect on patients and families and to call for action to improve rare kidney disease care and outcomes.
“It [IgA vasculitis] came from nowhere but in the space of five months it caused my kidneys to completely fail which was a real shock. It massively changed my life. I missed a whole year of school in year eight. At that time, there was no social media, we had no mobile phones and I lived in a little village, so I lost touch with a lot of friends and that is really difficult when you’re 13 years old.
“I struggled physically and mentally. Having the treatments, dialysis and being hooked up to those machines was a lot to take in. I was on a high dose of steroids, put on weight and couldn’t fit in my clothes, which made me self-conscious. It really knocked my confidence.
“I’d got talking to a mum who has a little boy with a similar story to me, 20 years apart. He’s ten now but also was diagnosed with IgA vasculitis and within five months his kidneys had failed - the same as me in 1999. It became clear that the treatments and outcomes hadn’t really changed in 20 years, and I was shocked. So that spurred me on to do something about it.”
It's been one week since the launch of our new report 'Collectively common: the devastating impact of rare kidney diseases in the UK.'
Head to the link to read our 10 key findings and 14 recommendations: https://t.co/TNbsiyB3Vq](https://pbs.twimg.com/media/G2VkoDkXkAAcjVb.jpg)
Our new report, looking into rare kidney diseases in the UK, has uncovered shocking statistics in diagnosis delays, inconsistent care, and long waits for new treatments, with the impact being more severe for children.
Rare kidney diseases include over 150 distinct diseases that, while individually uncommon, are estimated to collectively affect around 160,000 people in the UK.
Following our findings, we are calling on government to deliver faster diagnosis, ensure children can be included in clinical trials, and commit investment into research and services so families are no longer left behind.
Sandra Currie OBE, chief executive of Kidney Research UK, said: “This report provides the first real insight into the significant impact of rare kidney diseases and, importantly, lays out a clear path for action. We need faster and more accurate diagnoses, smoother transitions between child and adult services, and better inclusion of children in clinical trials so they are no longer last in line for innovation.”
Head to our report to see our 10 key findings and 14 recommendations: https://t.co/TNbsiyB3Vq
Do you live with or know someone living with a rare disease? We’d love to hear your experiences in the comments.
This is why we fund science. And experimental gene therapy.
Who to follow
When I applied for training, I thought a competition ratio of 5 was ridiculous. But now... 14? 21??27??? It's inexcusable. This isn't poor workforce planning, it's a scandal.
Governments will turn the tap on and off as it suits but need to be reminded that these numbers represent PEOPLE - doctors, their own constituents with hopes and dreams for their own careers!
Following yesterday’s strike ballot result, we met with @wesstreeting
It’s clear: the Government is refusing to negotiate on pay.
We are now preparing for a full 5 day walk-out, beginning on Friday 25 July.
Our door will always be open to constructive talks.
#PayRestoration
Most doctors now have no confidence in the GMC.
So today we announce the BMA's NEW register for all doctors.
Sign up today to show your support for change. https://t.co/XzxfPv3a6i #BMAARM25
Pay - our pay is still 20.9% eroded after the DDRB recommendation
Conditions - doctors are sitting on bins
Opportunities - PAs earning more, training bottlenecks, looming unemployment
Frankly, I don’t see much improvement.
Vote YES for FPR
Vote YES to make them take action
A message to our resident Doctor colleagues. Fight hard for pay restoration, strike if you have to.
I & many of your Consultant colleagues support you. We will cover strike action to keep the IP service safe.
Lying down & accepting a mediocre settlement will only perpetuate pay erosion. Doctors have been far too passive for far too long.
Skilled. Exhausted. Underpaid. That’s the reality for NHS doctors earning just £17/hr to care for your loved ones in their most critical moments.
Resident doctors are asking for £22/hr. A fair wage for highly skilled work.
But @wesstreeting won’t even come to the table. He’s hiding the pay review body’s report. He’s refusing to negotiate.
Same old Tory tactics. Just a red rosette this time.
Doctors, there are 9 days left until the ballot opens. To receive a ballot on time, make sure you update your workplace and home address details via: https://t.co/5KvMJe87lt
This Sunday, I am running the AJ Bell Great Bristol Run for @Kidney_Research !!
If you can donate, any amount can improve the lives of those living with kidney disease (including children and young people) 💜
@Great_Run #GreatBristolRun
https://t.co/cocl9EM3mY
The fight for fair pay is back on. We did it last year, we can do it again 📢 Our ballot for industrial action will open on 27 May.
Update your details here and get ballot ready https://t.co/rVhkJWhnaH
Doctors, know your worth!
This @UKLabour doesn’t care about public sector
Doctors are paid £17ph. Pay is down 22% from 2008
It should be being restored but instead govt wont’t fund
@BMAResidents plan to ballot
Doctors, update details:
https://t.co/byGlZT9P8R
Spread the word✊🏾
https://t.co/tg8t7J5fXx
Have your say on the future of medical training.
A call for evidence is now open until 20 May 2025: https://t.co/lv6oE07xmH
#MedicalTrainingReview #NHS
@ChloeECWil @NIHRresearch @OfficialUoM Very well deserved after all your hard work 🫘 👩🔬 Manchester is lucky to have you!
Merry Christmas everyone!
Resident Doctors (who often graduate with £100k+ worth of student loans) are the lowest paid workers in the hospital on Christmas Day.
Please retweet this to support doctors, and to ask @10DowningStreet to pay all NHS staff fairly.
#FullPayRestoration
National recommendations for the management of children and young people with IgA vasculitis: a best available evidence, group agreement-based approach
@louise_oni, @JanDUDLEY17
https://t.co/Z1SXcmVOR9
Now published…
**The FIRST EVER UK guidelines for childhood IgA Vasculitis, complete with rare disease methodology**
A crucial milestone to progress an evidence free zone
https://t.co/9SZWCGudOb
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