2020

Posted on December 7, 2020 by chrisperrault

Tune in on Wednesday 12/9/2020 at 7:30 AM Est on Lifetime channel for the Beyond The Mystery segment of The Balancing Act. Beyond The Mystery is segment they do on rare and genetic diseases and for this one they will include a focus on IgA Nephropathy.

I’ll admit I’m new to this program and hadn’t heard of it before it was posted to the IgAN Foundation’s Facebook group, but now I’m interested in seeing what they do going forward.

Be sure to check it out!

Edit: I originally posted that this would be on at 7:30 PM which was wrong. This will be 7:30 AM. It’s a morning show. I need to make sure I’m fully awake when posting these things. Sorry for any confusion.

https://thebalancingact.com/category/behind-the-mystery/

Update:

The episode has aired and the IgA Nephropathy Foundation Of America has the segment (just under 10 minutes) on their Youtube channel. I recommend checking out the video (linked below) and the rest of the videos they have on their channel.

Covid-19 and What It Means For The Dialysis Community

Posted on December 5, 2020 by chrisperrault

Below is a link to an episode of The New Normal (an online documentary series). This roughly five minute episode takes a look at how the emergence of Covid-19 has impacted those on dialysis. Unlike patients with some other conditions, patients in kidney failure don’t have the option to stay home and put off dialysis treatment, even in the face of a pandemic.

This informative piece does a good job showcasing the physical and emotional toll this takes not only on the patients, but also the caregivers and the risk their loved ones take on as part of the process. It’s a short episode but worth checking out:

https://crosscut.com/video/new-normal/when-you-need-dialysis-staying-home-harder

B Positive: Kidney Disease Goes Primetime

Posted on November 7, 2020 by chrisperrault

Be on the lookout for B Positive, a new sitcom appearing on CBS. You can catch it on Thursday nights at 8:30. This show centers on a newly divorced man who is suddenly and unexpectedly diagnosed with kidney disease. He then gets an offer of a kidney donation from an unlikely source after reconnecting with an old friend.

This series is unique in that the plot focuses largely around a man’s journey with chronic kidney disease, something not well represented today in pop culture. I hope it helps shine a light on a disease that silently affects millions of people.

I just finished watching the pilot episode. Since I don’t watch a ton of sitcoms these days it’s hard for me to really give it a good assessment. That being said, as a pure comedy, it’s not exactly Seinfeld, but I do think the characters will grow on us over time. I’m already finding myself instinctively nitpicking how some of the diagnosis and treatment aspects are depicted, but I’m also realistic enough to know that a 30 minute sitcom will need to take some liberties at times with some of he technical aspects of CKD treatment. With that understanding, what I’ve seen so far is actually quite well done.

I encourage people to check it out and spread the word. Let me know what you think in the comments below!

New Potential Treatment For IgA Nephropathy

Posted on November 1, 2020 by chrisperrault

In my previous article What I Did On My Summer Vacation I highlighted some of my experiences so far with my involvement in a clinical trial to treat IgA Nephropathy. Clinical trials will be a theme I come back to often going forward as I can’t stress enough the importance of volunteering for them if you are able. It’s the only way to get the necessary treatments into the marketplace.

I saw the following link posted on social media and thought I’d share it here. If the reports are legit, this is another drug that has serious potential to reduce proteinuria. As of this writing it is currently in phase 2. There is real momentum out there that as patients we need to stay on top of!

Novartis’ iptacopan gets EMA’s orphan drug designation in IgAN

Covid-19 and Kidney Disease

Posted on March 21, 2020 by chrisperrault

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.

Nephcure Nephrotic Syndrome 101 Webinar

Posted on March 20, 2020 by chrisperrault

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?

Book Review: Who Lives, Who Dies With Kidney Disease

Posted on March 15, 2020 by chrisperrault

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.

Continue reading →

Kidney Transplant Animation

Posted on February 16, 2020 by chrisperrault

This is a great animation I found on Youtube that details how a kidney transplant is performed. While a lot of the jargon is over my head, it’s fascinating how they pull this off and the care involved. I never thought I’d be so fascinated watching veins get sewn together but it really is amazing how they do this.

It’s not a long video, so it’s a good seven minutes well invested.

IgAN and Transplant

Posted on December 25, 2019 by chrisperrault

This is a recent talk at the University of Leicester in the UK. It is a good basic overview of how transplantation is done in general and also adds some interesting IgAN specific information at the end regarding whether or not it comes back post-transplant which is of great interest to me. It’s not too long so give it a look!

What is Nephrotic Syndrome

Posted on December 8, 2019 by chrisperrault

Nephcure Kidney International has some great material on Nephrotic Syndrome and the various diseases that lead to it. Nephrotic Syndrome is a little hard to describe but as NKI has it stated, it is an umbrella term for any number of conditions brought on by glomerular diseases, especially those that lead to protein and blood being leaked into your urine. Focal Segmentation Glomerulosclerosis(FSGS) is one such disease, with another being IgA Nephropathy. There are other diseases that will lead you down the same path, so check out the Nephcure site at https://nephcure.org/livingwithkidneydisease/understanding-glomerular-disease/ to learn more.

This is a great intro video to Nephrotic Syndrome and the real life impact it has on patients and caregivers.

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