Why is Kidney Disease not newsworthy?

[jflorax]

This is my frustration. Kidney Disease doesn't appear to get the same media attention as other diseases. You really have to search to find anything written about new treatments. We have a wonderful organization where I live called the Kidney Foundation of Canada. As a non-profit, they do so much for kidney patients. I'm trying to draw attention to the Foundation and raise money to donate, but so far I got crickets, no response from all the areas/media I have contacted. I wrote a book about my family's journey with the disease with the proceeds going to the Kidney Foundation and I have an online fundraising campaign going.

Yep, this is a bit of a whine. How can we raise the profile of kidney disease? There are so many of us.

This forum is my go-to to keep me going some days. Please keep sharing.

[orangecity41 NKF Ambassador]

Welcome. Great you have written a book on Kidney issues and your family. . Nice you have found our forum which offers support and education on Kidney Disease. Maybe spread the word about Health Unlocked, National Kidney Foundation, to assist in spreading the word. in Canada.

[Darlenia]

I think part of the problem is that chronic kidney disease is a very broad umbrella term for various illness that damage the kidneys. I suspect this leads contributors or beneficiaries and news media to interact with other non-profits that deal directly with the underlying causes that led to the kidney problems - for example, in my country, the American Diabetes Foundation has a huge research arm devoted specifically to diabetic kidney disease and related. Then those findings get attention. I view the situation as a book. Chronic Kidney Disease is a the title. Then there are all the powerful subtopics and the bulk of the book : diabetic kidney disease (American Diabetes Association), autoimmune related kidney disease (Autoimmune Association), an so on. I sense it may be worthwhile to expand the outreach - partner with similar organizations in Canada, so everyone can benefit in some way including your followers as well as the media. Be a repository for all research, in other words, that everyone will want to access. These are simply my thoughts, I hope they make some sense.

[WildIris]

I agree. I never heard of CKD until my doc said I had it, probably from too many NSAIDs to treat painful lupus. A friend recently developed it, probably from Covid, and she'd never heard of it either and always uses a Naturopath, which is good since medical drs. can's do much anyway except ignore it since they are not trained to prescribe diets. Anyway, that's good work there in Canada.

[Badger2024]

It infuriates me that our eGFR doesn’t come up as abnormal until 59 or under when it’s already Stage 3a. Outrageous as the doctors can see it year by year getting lower when still in the 60s and say nothing. I had to research myself and tell my doctor that I had CKD. She then said ‘Oh yes but it’s only mild just drink more water’! The GP (PCP) organisations that advise GPs need to insist that the GPs investigate earlier. Why does the asterisk in your labs only appear when under 60? Should at least be 70. Haha you can tell how mad I am

[CrazyFloridian]

I agree. ALL urine testing should be for microalbuminuria. All patients with an eGFR of less than 90 should be counseled on what to do to prevent it from going lower. All lab screening should include a cystatin-C level now instead of creatinine. Food manufacturers should be made to lower sodium content in processed food. They have created a bunch of salt addicts with hypertension leading many of them into CKD.