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.
The Kidney Projectreleased 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 linkto their Facebook page.
Nephcure Kidney International has recently announced the second annual Boston based fundraising gala Countdown To A Cure will be taking place on Saturday September 26, 2020 at 6:00 PM. The event will be held at the Boston Marriott Hotel in Quincy, Massachusetts.
I for one am looking forward to this event and meeting up with other patients and learn how they are coping with the various forms of kidney disease. This event will raise funds for Nephcure, which will in turn be used to help fund medical research that will eventually lead to real treatment options and hopefully keep more and more people from needing dialysis and/or transplants.
I hope to learn more about this event in the coming weeks and will pass on any relevant information as it comes along. Let us know if you plan on attending in the comment section!
So if you’ve been following my story (and for the sake of this article I’m going to assume you have), you know that over the summer of 2019 I was diagnosed with IgA Nephropathy, a disease that while considered rare compared to some of the sexier diseases, is also the third leading cause of Chronic Kidney Disease (after Diabetes and High Blood Pressure).
Having been diagnosed with a disease I knew little about, yet knowing it can and often does have serious implications for the patient long-term, my first reaction was, well, paralysis. This was my first time being faced with a life altering – and potentially life threatening – disease. This was the sort of thing that only happens to other people, not me. I always assumed I was going to go out the same way I had lived – in a blaze of stupidity. Like falling down an exposed manhole in busy downtown Haverhill. Or being attacked by a hungry black bear (also in busy downtown Haverhill for some odd reason). Getting taken out by a disease? That’s for other people.
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.