While my goal is to pull together other patients who are coping with Chronic Kidney Disease in some form or another, I’d also like to reach out to you healthy people and ensure that you never have to join our ranks.
For all the advances in treatment options that may be coming down the road, do you know what still remains the best treatment for kidney disease?
Not getting it at all.
If you are following the developments of the Covid-19 virus as most people are at this point, you know that a lot of information is flying towards us at a pretty fast pace right now. Things are a little confusing and very much out of the ordinary. If you are a kidney disease patient with autoimmune concerns, this is especially true.
Below is a short video that was posted on Youtube by Nephcure Kidney International with some general advice for kidney patients (a lot of this applies to everyone really) on how to avoid the virus as much as possible and what to do if you feel you may be getting sick.
It’s a short video and worth checking out.
If you are like a lot of people there’s a chance you’ve never heard of Nephrotic Syndrome. It’s also possible you are now reading this because you’ve only recently been diagnosed or have a loved one who been diagnosed with this condition. I know I’m still trying to sort out not just the different diseases that result in NS, but why they are such a common cause of kidney failure. There’s a lot to learn here.
This video, a webinar from 2017 hosted by Nephcure Kidney International is a great introduction to NS by Dr. Mindy Banks. It runs for just under an hour and I recommend carving out some time watch her presentation as she does a good job of covering a lot of ground not just for relative newcomers like myself, but she also answers some questions for patients and parents who have already been struggling with this condition.
Are you new to Nephrotic Syndrome? How has it impacted your life?
So a couple months after my diagnosis after nearly exhausting my web searches for kidney disease, I finally remembered to branch out and being something of an avid reader decided to track down some Kidney Disease themed books. To my surprise and disappointment, there isn’t a whole lot out there.
One of the books I did find I decided to take a chance on. It’s titled Who Lives and Who Dies With Kidney Disease by Mohammad Akmal and Vasundhara Raghavan.
The Kidney Project released a brief update on their Facebook page on March 10 regarding the push toward the clinical trials. In have had some discussions with the FDA already and they expect to have two or three more over the coming months so that they can (hopefully) submit the full application package over the summer.
Based on the tone of the update they sound cautiously optimistic that this is going to move forward, but the reality is it will likely continue to be a slow process. It’s just how it works when you try to bring this sort of product to market. There are a ton of safety requirements that have to be met before they can even think of starting clinical trials so it’s understandable why they have to take a very deliberate pace.
You can read the official update by following this link to their Facebook page.
You can support the efforts of The Kidney Project by contributing here.