Ayesha Edmondson Peer Educator / Ambassador for @kidneyresearchuk To raise awareness for the need of more Living Donors in the BAME Communities All Views My Own
Joined November 2021
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Starttheconversation121 retweeted
Professor Alan Salama has received a Professor Michael Nicholson research project grant, to look at developing a new test to detect the presence of harmful proteins or other compounds (known as factors) to the kidneys in focal and segmental glomerulosclerosis (FSGS) patients.
This is to understand the causes, and which treatments may be most effective, with the aim of preventing recurrent disease in the new transplant.
It is thought there is a factor present in FSGS patients’ blood which causes damage to the kidneys.
A blood test to identify the presence and type of one of the harmful factors in the blood could be used in the future to screen FSGS patients before transplant surgery.
This could allow doctors to try and remove this factor from the blood to protect the transplanted kidney, helping it stay healthier for longer.
“At the moment our understanding of what causes FSGS and the treatments we have are limited. Developing this test could mean we have new approaches that meet the needs of individual patients in the future, identifying who might relapse and who might not, and understanding which therapies might be best in each case.
“Using NURTuRE, which includes 49 FSGS patients who’ve had a transplant, with linked clinical data, enables us to use a large number of samples to validate our clinical set-up.” 𝗣𝗿𝗼𝗳𝗲𝘀𝘀𝗼𝗿 𝗔𝗹𝗮𝗻 𝗦𝗮𝗹𝗮𝗺𝗮
Read the full story here: bit.ly/3Hgalqq
ALT Alan smiling for a headshot photo. He is wearing blue scrubs and behind him is part of lab, showing equipment and clock.
Starttheconversation121 retweeted
Oh yes! Did you know that there's been a surge in people from the Black and Asian communities opting out of the #DonorRegister? Why is this happening? I'll be referencing verses from the Bible, Koran and fatwas, that support giving. Join me tomorrow at 5pm. – at Worsley, England
Join us tomorrow, Sunday, 20 April, with our Chair, @AsumuHilaria, on @RadioAfricana at 5pm as she explores what support #OrganDonation has from religious & faith leaders. Don't miss it! #GiftOfLife #BeTheChange #LifeSaver #CommunityHealth #HealthEquity #FaithInAction
Please click the link 🔗 in post to read and show your support by sharing.. 🙏🏾💜
We're calling on the UK Government to support a World Health Organisation (WHO) resolution on kidney disease!
The resolution recognises the urgent need for global action to prevent and manage chronic kidney disease and will be considered at the 78th World Health Assembly in May.
Read our news story to find out more: bit.ly/42AG6B5
Starttheconversation121 retweeted
NHS England is being abolished – this is the body that oversees the NHS in England. It is not the NHS itself.
Instead, the NHS in England will be brought under direct government control, similar to the structures that were in place before 2011.
We look forward to holding the government directly to account and will continue to call for the new system to prioritise:
• Prevention of kidney disease
• Earlier diagnosis of kidney disease
• Access to best practice care and treatment.
The system may be changing, but we will always be here for kidney patients - on #WorldKidneyDay, and every day.
Tell us what you think of today's news in the comments 👇
ALT Infographic stating "NHS England is being abolished. This is the body that oversees the NHS in England. It is not the NHS itself." and an arrow indicating the user to swipe right.
ALT Infographic stating "Instead, the NHS in England will be brought under direct government control, similar to the structures that were in place before 2011." and an arrow indicating the user to swipe right.
ALT Infographic stating "We look forward to holding the government directly to account and will continue to call for the new system to prioritise: Prevention of kidney disease, Earlier diagnosis of kidney disease, Access to best practice care and treatment." and an arrow indicating the user to swipe right.
ALT Infographic stating "The system may be changing, but we will always be here for kidney patients on #WorldKidneyDay, and every day."
Starttheconversation121 retweeted
🙋♀️We had Monday brain - link is now below!
#WorldKidneyDay
The #WorldKidneyDay campaign and plans are now live!
This year, we're excited to launch a new campaign called 'Don't Kid Yourself.' It's all about challenging the myths about kidney disease and shedding light on the true facts.
Take this myth.
There are many reasons why someone gets kidney disease but the common misconception is that it's only caused by eating badly, drinking alcohol, smoking and not exercising. Think again.
Want to get involved? Click the link below to discover the plans and get people talking! 👇
@kidneycareuk
@UKKidney
@PophamKidney
@KidneyWales
@NKF_UK
@PKDCharity
@kidneydayUK
#KidneysMatter
ALT Infographic stating 'Think kidney disease is just bad lifestyle choices?' in bold black text on a yellow background.
ALT Promotional image featuring a burger against a yellow background with the text "Don't Kid Yourself" and the hashtag "#KidneysMatter" at the bottom.
Please read.. it could save your life.. 💜
Detecting kidney disease early is crucial for slowing its progression and providing more opportunities to manage the condition effectively.
It can also give you the chance to make lifestyle changes and manage other health conditions, such as high blood pressure (hypertension) and diabetes.
Some of the symptoms listed below can show later stages of kidney disease:
- Tiredness
- Swollen ankles and feet
- Decreased appetite
- Headaches
- Changes to your urine frequency or appearance
There are several tests that are used to check the function of your kidneys:
- Blood tests
- Serum creatinine
- eGFR
- Urine tests
- Urine albumin test
You might be offered imaging tests to look at your kidneys' structure and function. These include:
- Ultrasound
- Kidney biopsy
If you are experiencing any of these symptoms, arrange an appointment with your GP.
Find more information here: bit.ly/4hLbdA4
ALT Info graphics on a fuchsia and purple background. White wording reads “How is kidney disease diagnosed?”. A white graphic of a kidney with the right one looking damaged sits in the middle of the page under the wording.
It’s heartbreaking to read that patients with CKD is not recognised enough to financial support. It’s a huge life altering condition.
Nigel was diagnosed with focal segmental glomerulosclerosis (FSGS) in 2023 after being rushed to A&E due to severe headaches.
“Things took a turn when I began getting headaches a few months before my diagnosis. My blood pressure was high, and my urine was frothy. I thought maybe I was drinking too much coffee, but it kept getting worse. One morning I got up for work and felt like I’d been hit by a truck. I couldn’t move and my headaches were excruciating.
“I spent two days in A&E being tested. My dad died from a brain tumour so doctors thought my symptoms might be related. However, my urine test found protein in my wee which led them to diagnose me with FSGS.
“My life has gone downhill drastically. I’ve not been able to work, and my sick pay has stopped. Financially it has been a massive hit. I’ve worked all my life but trying to get support has been really hard.
“Having kidney disease doesn’t seem to count. Everything has been a fight. It was hard enough for me to get up and walk, but I was expected to be at the job centre every week. That was impossible and I was penalised because I couldn’t get there.
“It has been really frustrating not being able to do simple things I feel I should be able to. I’ve felt like a burden, and it has really affected my mood. It has been very tough. My sense of humour has got me through a lot. To quote Chumbawamba: ‘I get knocked down, but I get up again’.”
Having his wife, Annie, by his side has helped with his diagnosis. She says:
“If we can help one person to spot signs of kidney disease and get seen by doctors sooner, that would be amazing. It’s important to take notice of your health, spotting signs like persistent headaches, high blood pressure and frothy urine. I don’t think people are checked thoroughly enough and you have to be persistent.”
Take our free, quick, and easy online health check today: bit.ly/3iTC43I
[Image description: Nigel and Annie posing for a selfie on a beach promenade. Nigel is at the front, wearing black sunglasses and a vibrant red and green top which appears to be a Welsh sports top. Annie is hugging Nigel from behind, she has bright blond hair and h a full fringe. Behind them is a sandy beach, rolling waves, and a cloudy skyline.]
ALT Nigel and Annie taking a selfie on a beach promenade, with one wearing sunglasses and a vibrant red shirt, and the other partially visible behind. Behind them is the beach, sea, and a cloudy skyline.
Just amazing..
On Monday we held a roundtable discussion in Parliament on health inequalities in kidney disease, bringing together a range of experts, including Professor Bola Owolabi, Director of the National Healthcare Inequalities Improvement Programme at NHS England.
Co-chaired by chief executive, Sandra Currie, and patient representative, Fez Awan, the discussion builds on last year’s health inequalities report. Around 40 attendees joined us, including Prof. Smeeta Singha and academics who contributed to the report.
A special thank you to Daniel Newman for sharing his personal experience of T1D and CKD.
@Fezy
ALT (L-R) Daniel Newman, Tracey Murray, Professor Shivani Sharma, Dr Gavin Dreyer, and Sandra Currie stand and smile for a group photo in front "Time To Act: A New Review of Kidney Health Inequalities" pull up banners.
ALT A group of individuals sitting at a table during a conference, with banners and computer holding screens reading "Time to Act" in a room with wood-panelled walls and office chairs.
Starttheconversation121 retweeted
We need your help to help shape the future of the NHS 10-year plan. The Government is inviting input - now is the time to have your say.
In June, we published a report revealing that kidney disease has become a public health emergency. Without urgent action, the cost to the UK economy could rise to £13.9 billion within the next decade.
We must act now. Earlier prevention, improved management of chronic kidney disease (CKD), and higher rates of transplantation are some of the ways to combat this crisis.
This is where you can help. Your voice is vital.
We are asking supporters impacted by kidney disease, whether personally, through a family member, as a carer, or as healthcare professionals, to complete the NHS questionnaire.
If there are any questions you need help on, together with the National Kidney Federation, we have made a list of suggestions.
Fill in the questionnaire, pick public or workforce, here: bit.ly/409xNuM
Find our suggestions: bit.ly/42tqyk8
@NKF_UK
ALT Promotional graphic urging participation in including kidney disease in the NHS 10-year plan, with text and a megaphone icon on a purple background.
Starttheconversation121 retweeted
This #ChildrensMentalHealthWeek we are sharing Harley-Ray’s story.
In 2020, nine-year-old Harley-Ray was diagnosed with kidney disease, and since then, she has been determined to improve people’s understanding of it through regular fundraising events in her local community.
Just like all of us, Harley-Ray has her ups and downs. But on the good days, she creates videos to inspire and support others who might be going through similar challenges.
Her mum, Chloe-Jade, says: “I've seen Harley-Ray have good days and bad days. It's heartbreaking when she has a sad day, as she does worry about death and whether one day her kidney disease will make her so poorly that she doesn't wake up.
“She has had anxiety since becoming unwell. However, she has many good days and uses these days to share videos and pictures to help raise awareness of kidney disease.
“Her latest fundraiser is an Easter Charity Party which will take place in April. I'm very proud of her and everything she has gone through and handled at such a young age.”
Thank you Harley-Ray for using your voice to help others. 💜
Starttheconversation121 retweeted
Yesterday marked the successful culmination of my FHfA research in #PublicHealth. My colleagues and I presented our projects to a diverse group of senior public health directors. It was a valuable experience I would recommend to anyone interested in the field of public health. – at Salford, England
Starttheconversation121 retweeted
BREAKING NEWS: The FDA has approved Ozempic for patients with kidney disease. This means the injection can be used to reduce the risk of kidney disease worsening, kidney failure and death from cardiovascular disease in patients with CKD and diabetes. cnbc.com/2025/01/28/novo-nor…
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“Because today it's my life on the line, but tomorrow it could be yours.”
Award-winning artist Terrell Lewis performed a captivating spoken word poem at The Andy Cole Fund Gala, earning a standing ovation. His powerful poem shed light on the harsh realities of living with kidney disease.
The piece was inspired by real stories and experiences shared by patients on their journey with this condition, bringing their emotions to life.
Our heartfelt thanks to Terrell for capturing the raw emotions and lived experiences of those impacted by kidney disease.
Starttheconversation121 retweeted
If you are a kidney patient or carer and would like to join this virtual workshop on depression in CKD to help input into prioritising guidance for care, please email [email protected] 🤞🏼
Do you have an interest in the management and identification of depression in those living with chronic kidney disease (CKD)?
Join an online multi-disciplinary workshop on Friday 24 January, 10:30am – 3:30pm, where Professor Joe Chilcot and his team will share the findings and recommendations for best practices for psychosocial kidney care from the MOODMAPS study.
If you’d like to attend, email: [email protected]
Starttheconversation121 retweeted
An inspirational message from transplant recipient @iamzo33 at the @ASNKidney conference.
Starttheconversation121 retweeted
This is awesome! So many young women are suffering in silence and have nowhere to turn. Thank you for being the voice for these young women, Sarah. Well done. 👏🏽 #MeToo #TimesUp #NoMoreSilence
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Thank you so much, I really appreciate this highlight. #LivingDonation gives people a better outcome with their transplant. People can donate a sliver of their liver, which grows back to its full size and/or a kidney and still live a full life. Contact your #LivingDonationTeam
Huge thanks to cllr @AsumuHilaria today for her stall highlighting in the importance of becoming an organ donor today. Visit organdonation.nhs.uk to find out how to join the register and save lives.
