I started this blog to share my journey with inflammatory bowel disease (IBD), specifically Crohn’s disease, and how fitness and food have played a role in my quest for better health. While I’ve shared quite a bit over the years about my Crohn’s journey, I haven’t shared much about my more recent diagnosis of IgA nephropathy. So, I thought I would go ahead and dive in!
First, what is IgA nephropathy?
As described by the American Kidney Fund, a nonprofit dedicated to fighting kidney disease, “IgA nephropathy (nuh-FROP-uh-thee) is a disease that causes inflammation (swelling) and damage to your kidneys. In IgA nephropathy, proteins that are made by your immune system (immunoglobulin A or IgA) get into your kidneys. These proteins build up and form clumps inside the tiny blood vessels in your kidneys that clean your blood (glomeruli). Over time, this buildup causes inflammation and damage to the glomeruli and lowers your kidneys’ ability to filter waste and fluid from your blood.”
But what exactly does that mean for me?
The short answer is reduced kidney function. The real question, however, is how much kidney function I’ll lose over time. For some people, IgA nephropathy will remain stable or progress so slowly that there is minimal decline in kidney function throughout their lifetime. But for others, it will progress to end-stage renal disease—kidney failure. When crescents are present in the kidney biopsy, it indicates rapid progression, but for those without crescents (myself included), we end up in a type of no man’s land where we are just watching and waiting to see what will happen, wondering if our kidneys will fail in ten or twenty years from now.
For some reason, this gloomy diagnosis doesn’t really bother me. I’m not sure whether it’s all the mindset and meditation work I’ve done over the years that is allowing me to accept things as they are, the fact that I’ve already faced the reality of having one incurable disease, or if I’m just in denial about what might happen. There are no guarantees, so I’m personally choosing to not let it overwhelm me.
Don’t get me wrong, I’m not dismissing this disease or diagnosis in any way. According to the IgA Nephropathy Foundation, “It is estimated that 20-40% of the people who have IgAN will develop end-stage kidney disease, which means they will need dialysis or kidney transplantation to survive.” That’s a scary number. And for some people, it’s a very hard pill to swallow. When I browse the forums and IgA nephropathy social media groups, this diagnosis—coupled with not having any way to know whether it will progress to kidney failure—is crippling for some.
While there is no cure, there are treatment options that are designed to help slow the progression of kidney damage. That is why I take a low-dose blood pressure medication. My previous nephrologist explained to me that the blood pressure medication I take relaxes, or widens, the blood vessels so proteins pass through more easily, reducing damage to the kidney caused by proteins that clump together and cause inflammation and damage.
How is it diagnosed?
A kidney biopsy is the only way to confirm IgA nephropathy. While I was not looking forward to my biopsy in January 2021, I knew it would give me and my nephrologist important answers. For one, it would confirm what we expected was IgA nephropathy, but, second, it would also give us information as to whether it was rapidly progressing, which would be indicated by crescents. At that point, my most significant symptoms were blood and protein in the urine. The biopsy went well. I had no issues and—despite my anxiety about the procedure—no pain. If it isn’t obvious by now, IgA nephropathy was confirmed and I’ve been under the care of a nephrologist since.
Is there a connection between IgAN and Crohn’s disease?
Yes, but exactly how and why isn’t necessarily clear. When I search Google about an association between the two, there is no clear answer listed at the top of the search results. However, there are a number of studies looking into the two diseases and showing an association. For example, in one article in Frontiers in Genetics, “Causal association between inflammatory bowel disease and IgA nephropathy: A bidirectional two-sample Mendelian randomization study,” November 2022, the authors stated, “An association between inflammatory bowel disease (IBD) [which includes ulcerative colitis (UC) and Crohn’s disease (CD)] and IgA nephropathy (IgAN) has been discovered in observational studies, but the causal relationship is still unknown.”
More recently, a June 2023 article in the World Journal of Methodology, “IgA nephropathy associated with Crohn’s disease,” was a review discussing “the possibility of the mechanism involved in IgAN associated with Crohn’s disease based on the findings of basic and clinical studies.” The authors further noted that, “the stabilization of the disease condition of Crohn’s disease is believed to help treat IgAN.”
While more studies are needed to clarify the relationship between Crohn’s disease and IgA nephropathy, it is not uncommon for a person with one autoimmune disease to have multiple. But no matter how many I have or end up with, my mindset remains the same. I will continue to lean into diet and lifestyle practices that promote better health, giving my body a solid foundation to fight from, and rely on the guidance and care of my medical team to make sure I can remain as strong and healthy as possible.