Kidneys are often thought about in a jokey way, wishing to ‘sell’ one to fund that new pair of shoes you want, only needing one of the useless blighters etc. but the reality is, to 850 million of us with chronic kidney disease, kidneys are a big and serious deal.
The global burden of CKD is increasing, and is projected to become the 5th most common cause of years of life lost globally by 2040. CKD is a major cause of catastrophic health expenditure. The costs of dialysis and transplantation consume 2–3% of the annual healthcare budget in high-income countries. Crucially, kidney disease can be prevented and progression to end-stage kidney disease can be delayed with appropriate access to basic diagnostics and early treatment. This year World Kidney Day continues to raise awareness of the increasing burden of kidney diseases worldwide and to strive for kidney health for everyone, everywhere. Specifically, the 2020 campaign highlights the importance of preventive interventions to avert the onset and progression of kidney disease.– worldkidneyday.org
As you can see, awareness and early diagnosis are crucial in slowing down chronic kidney disease and easing the burden in health systems around the world. A fellow member of a kidney disease support group I am part of has started a UK petition to start newborn screening for kidney issues in children, as so many of our affected youngsters have been slowly and silently deteriorating from this debilitating and scary disease for years, un-checked and without diagnosis. If you would like to support this petition, please follow this link.
If I hadn’t trusted my instincts and pushed hard through 6 months of being doubted, back and forth again and again with GP and paediatrician visits, Sullivan’s constant and high blood loss through his urine wouldn’t have been noted as an ongoing problem. If I decided not to take Thom to A&E those two times he was in severe discomfort (and believe me, I agonised over it as I know how stretched resources are) then his constant and high blood loss through his urine wouldn’t have been noticed. The paediatrician wouldn’t have had the hunch to send us to genetics and we wouldn’t have the diagnosis of Alport Syndrome that all three of us are living with today.
Knowledge is power when it comes to chronic disease, as I somewhat touched on in my blog about Rare Disease Day. It’s so important to achieve early diagnosis to slow down, aid or even in some cases stop the progression of a disease. Change is imperative with regards to CKD as the health services around the world are struggling, badly. People are discovering unexpectedly that their kidneys are barely functioning with no idea how or why, it is becoming more of a regular occurrence and it has scary consequences. I’ve read numerous, heartbreaking tales of people having to go straight to dialysis as soon as they discover they have CKD. Imagine not being able to prepare for that kind of change in lifestyle… suddenly you’re thrown in to waiting for someone else to donate you an organ, so you can continue to live. Luckily we have a while until we have to cross those bridges with both our boys but it was still super hard coming to terms with those facts, even with a lot of time to prepare and inform ourselves. I can’t imagine the shock of having to go straight in to it.
This is why it’s so important to raise kidney disease awareness. There are so many causes of CKD including: genetic disorders (like we have), high blood pressure, diabetes, prolonged use of certain drugs, inflammation and infection. A person can lose up to 90% of their kidney functions before experiencing any symptoms and most people have no symptoms until CKD is advanced. Signs of advancing CKD include swollen ankles, fatigue, difficulty concentrating, decreased appetite, blood in the urine and foamy urine.
If you suspect you may be at risk of developing chronic kidney disease, please have your urine and blood tested if possible. Speak about it, arm yourself with knowledge. If you are on the CKD path, catching it early and helping yourself is the best thing you can possibly do.
While I’m here talking about kidney disease, I would absolutely love to hear how many of you are organ donors. Let me know below! Both of my sons will need a donor kidney in their lifetime, possibly two. They are also both registered donors, as are myself and my husband too. Talk with your family and let them know your wishes if anything were to happen, get yourself a cool donor card for your wallet! There’s even the option to be a living donor, which I think is one of the most amazingly selfless things anyone could do.