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  • From Personal Journey to Public Advocacy: Initiative Launched on World Kidney Day to Educate Black Communities on Kidney Health

    On World Kidney Day, 14 March 2024, DJ & Radio Presenter Candice McKenzie is launching the African Caribbean Kidney Education Enterprise ™ (ACKEE), a community interest company dedicated to addressing the disparity in kidney health within Black African Caribbean communities. ​ Did you know that people from Black communities are five times more likely to develop Chronic Kidney Disease (CKD) than other groups? Factors such as hypertension, diabetes, genetic predisposition, dietary habits, and a lack of health discussions within the community contribute to this disparity. ​ Candice McKenzie understands this challenge firsthand. Diagnosed with IgA nephropathy in 2019, she experienced the complexities of kidney disease and its impact on life. IgA nephropathy, also known as Berger’s disease, is an autoimmune condition with varying symptoms that may go unnoticed for years. As kidney function declines, complications such as high blood pressure and the need for dialysis or a transplant arise. ​ In 2022, Candice’s kidneys failed, leading her to start dialysis to sustain her life as she waits for a kidney transplant. Her journey underscores the pressing need for awareness and action within Black communities. 2022/2023 NHS data reveals a stark reality: although Black people represent 13% of the kidney transplant waiting list, only 2% of deceased kidney donors are Black. ​ Candice is committed to changing this narrative, which is why she is launching ACKEE on World Kidney Day. ​ "This World Kidney Day, I am keen to speak about my personal experience in a bid to raise awareness on the importance of kidney health so others can avoid being in the same situation that I find myself in," says Candice. ​ Through advocacy and education, Candice strives to reduce the number of people in the black African Caribbean community developing kidney disease and going on to have kidney failure and needing a transplant. ​ "I also want to raise awareness on the strong need for Black African Caribbean people to donate their organs when they die," she adds. ​ "This World Kidney Day, we need people from the Black African Caribbean community to: ​ Make a commitment to learn more about looking after their kidneys, a good place to start is the African Caribbean Kidney Education Enterprise ™ - follow @ wearetheACKEE  on major social media platforms. ​ Record their organ donation decision and share their decision with their family members. ENDS Notes for editors ​ The African Caribbean Kidney Education Enterprise (ACKEE) ™ is a registered Community Interest Company passionate about educating Black African Caribbean people to care for their kidneys in life and to donate them in death. ​ For more information, to request an interview or to sign up to receive ACKEE press releases, please get in touch with our team: news@ackee.org.uk

  • Why you should consider becoming a deceased kidney donor

    As we launch the African Caribbean Kidney Education Enterprise™ (ACKEE) on World Kidney Day, 14 March 2024, there are 5808 people active on the kidney transplant list, including myself. It is estimated that around 7.2 million people in the UK have chronic kidney disease (CKD) stages 1-5, making it the 10th biggest killer worldwide. As CKD progresses, kidneys can fail (known as end-stage renal disease), losing their ability to function properly. This results in the need for dialysis or a kidney transplant (from a living or deceased donor) to survive. Neither is a permanent cure, they are only temporary treatments to help sustain life. I completely understand and appreciate that being a living kidney donor for someone in need of a kidney is a major life-changing decision, one not to be taken lightly. However, if done, it can give the gift of life that I, and so many others, desperately require. However, there is a strong need for Black African Caribbean people to donate their organs in the event of their death. Let me explain why. Donated organs can be used to save or transform the life of someone urgently in need. The best match for organ donation typically comes from someone of the same ethnicity due to the need for similarities in blood and tissue. The NHS Blood and Transplant Annual Report on Ethnicity Differences in Organ Donation and Transplantation 2022/2023 shows that Black people represented 2% of deceased kidney donors, 12% of deceased kidney donor transplants, and 13% of the kidney transplant waiting list. The report also shows that Black patients wait on average 649 days for a kidney, highlighting the urgent need for more Black people to donate to reduce the waiting time. Black patients have to wait significantly longer for a successful match than white patients due to a shortage of suitably matched donors. If more Black people donated their organs after death, transplant waiting times would reduce. Unfortunately, nobody lives forever, and we cannot take our organs with us when we die. What we can do is leave a rich legacy and help another person live a little longer, as our organs can be used to save or transform the life of someone urgently in need. How can you help? Consider becoming a deceased kidney donor Share your decision with your family Share this blog and the work of the African Caribbean Kidney Education Enterprise™ (ACKEE) to help inform and educate others. Also find us on social media @wearetheackee Do you have ideas on how we can promote deceased kidney donation within the Black African Caribbean community? We welcome collaboration and partnership suggestions. Reach out to us via our contact page if you believe we can work together.

  • Over 80 Years of Dialysis: A personal reflection on relying on life sustaining technology to survive

    Did you know that the first dialysis machine was invented more than 80 years ago? ​ A Brief History of Dialysis Dialysis is a remarkable medical treatment that has played a crucial role in saving lives since its development in the 1940s. Dr. Willem Kolff, a pioneering Dutch physician, is widely recognised as the father of dialysis. In 1943, he constructed the first dialyser, also known as an artificial kidney, laying the foundation for modern dialysis treatment. Dialysis performs essential functions that your kidneys normally do to maintain the body's balance, such as removing waste and extra fluids, regulating mineral levels in the blood, and helping to control blood pressure. My Personal Journey with Dialysis ​ In 2019, I was diagnosed with IgA nephropathy, also known as Berger's disease, a kidney condition with autoimmune origins. As the disease progressed, my kidneys failed, and in 2022, I began dialysis as part of my ongoing treatment. ​ Initially, I underwent peritoneal dialysis, a form of home dialysis meant to offer flexibility. However, looking back, I found it to be quite restrictive for my lifestyle. I had to administer four fluid exchanges a day, every four hours, making it challenging to plan activities away from home. As someone with a portfolio career, balancing different professions including being a full-time podcast producer, a freelance radio presenter, and a travelling DJ, this restriction proved overwhelming. Traveling, especially overseas, became an incredibly stressful endeavour as I had to manage the logistics of carrying dialysis fluid with me. In March 2023, complications with peritoneal dialysis led to pneumonia, resulting in hospitalisation. It was then, in June 2023, that I decided to switch to hemodialysis via a line. This decision proved to be the best for my health. I now undergo hemodialysis three times a week, with each session lasting 3.5 hours, and I am thriving! I feel that it is important to note that alongside this life-saving treatment, several other factors contribute to my wellbeing. I am fortunate that my dialysis centre is close to my home, and that my sessions are scheduled at midday, allowing me to maintain a balance between work and treatment. I also prioritise a healthy lifestyle, ensuring I eat well, get enough rest, and take necessary supplements to keep my body balanced. Dialysis is not a cure; rather, it is a life-sustaining treatment. Without it, I would not survive. The Mission of ACKEE Having experienced kidney failure firsthand, I am immensely grateful for the availability of dialysis treatment. However, my journey has also taught me the importance of preventing kidney disease as well as having these amazing treatment options available. This realisation led me to establish the African Caribbean Kidney Education Enterprise (ACKEE). Our mission is simple yet profound: to educate Black African Caribbean communities about kidney health and the importance of organ donation.  By fostering dialogue, promoting healthy lifestyles, and raising awareness, we aim to create a future where kidney disease is less prevalent in the Black community. Our vision is to reduce the number of people dependent on dialysis by advocating for kidney health and encouraging organ donation. I invite you to join us in our mission to advocate and educate. A great place to start is to follow us on social media @wearetheackee where you can engage with our posts and learn more.  Together, we can make a difference in the fight against kidney disease. ​ ​How can you help? Consider becoming a deceased kidney donor Share your decision with your family Share this blog and the work of the African Caribbean Kidney Education Enterprise™ (ACKEE) to help inform and educate others. Also find us on social media @wearetheackee Do you have ideas on how we can promote deceased kidney donation within the Black African Caribbean community? We welcome collaboration and partnership suggestions. Reach out to us via our contact page if you believe we can work together.

  • Black patients wait 6 months longer for a kidney transplant than white patients

    "Black patients wait 6 months longer for a kidney transplant than white patients." This stark reality was highlighted in the NHS Blood and Transplant Annual Report on Ethnicity Differences in Organ Donation and Transplantation 2022/2023, first published in October 2023. The NHS data shows that Black patients are waiting significantly longer for a kidney transplant than white patients. Median waits are 649 days for Black patients compared to 463 days for white patients (page 13 of the report). In 2021/2022, median waits were 735 days for Black patients and 488 days for white patients. While it is encouraging to see that the waiting times have reduced, there is still a long way to go. There is an urgent need for Black African Caribbean people to donate their organs in the event of their death. Unfortunately, nobody lives forever, and we cannot take our organs with us when we die. What we can do is leave a rich legacy and help another person live a little longer. Our organs can be used to save or transform the life of someone urgently in need. How can you help? Consider becoming a deceased kidney donor Share your decision with your family Share this blog and the work of the African Caribbean Kidney Education Enterprise™ (ACKEE) to help inform and educate others. Also find us on social media @wearetheackee Do you have ideas on how we can promote deceased kidney donation within the Black African Caribbean community? We welcome collaboration and partnership suggestions. Reach out to us via our contact page if you believe we can work together.

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