Some big news in the world of IgA Nephropathy treatment. IgA Nephropathy finally has a targeted therapy! On December 15th, Calliditas Therapeutics announced the accelerated approval of TARPEYO (which was trialed under the name NEFECON). Hopefully this is only the first of several such announcements to come over the next couple years as more trials advance towards completion. This is big not just for IgAN but for all the Nephrotic Syndrome related diseases such as FSGS and Minimal Change Syndrome that have similar trials in the pipeline.
A cure is the ultimate goal!
I should also reiterate my plea that if you are a patient please consider applying to a clinical trial if one is available in your area. The biggest challenge for clinical trials for rare diseases is finding patients that qualify and are available. It’s very difficult to reach the required number of participants to make it work, so every patient matters. More information on current trials can be found at https://kidneyhealthgateway.com/trials-research/.
Please check out the official announcement from Calliditas Therapeutics below. The drug should be available to patients early in 2022.
Thanks to the IgA Nephropathy Foundation of America we now have a new introductory packet for patients with IgAN. This guide does an excellent job of detailing what this rare disease is, how to best handle your diagnosis and treatment plan and what scenarios could potentially play out over time.
Since the IgAN experience can be different for each patient there’s no one size fits all approach to treatment, but there are some common recommendations in how we should best care for ourselves.
If you want to learn more about IgA Nephropathy please check out the guide at the following link:
As I meet and read about other kidney disease patients one of the chief complaints I hear is that the people around them have a hard time believing they’re dealing with a serious illness. It’s not that they don’t care, it’s just that they expect people with chronic diseases to look well, more sickly. Some patients battling kidney disease have a rather unique problem in that they look a little too good.
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!
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?
In my previous article I left you on a bit of a cliffhanger. While I told you about my diagnosis of Chronic Kidney Disease, I didn’t tell you how I got it. In this article I’ll discuss what my suspected diagnosis was and what we ultimately found out based on my biopsy results. Some questions got answered, only to be followed by more questions.
I walked into my physician’s office for my six month checkup not really expecting it to be any different than it had been for the past few years. Lose weight. Take your cholesterol meds. Stay on your blood pressure medication. I expected the instructions to be the same. Outside of my weight issue and the fact that my blood pressure – which I never had any problems with before – had suddenly shot up before the last visit, I was actually in pretty good health. I was beginning to lose weight, albeit rather slowly. I didn’t take drugs and I drank moderately at most. What could go wrong?