IgA Nephropathy: A Personal Journey

I was diagnosed with IgA nephropathy (IgAN) in 2001, however, my journey began long before that. In hindsight, there were many warning signs that were overlooked or dismissed.

As a child, I had frequent strep throat infections, and as a teenager, I often developed urinary tract infections (UTIs). More concerning, however, was that routine physicals repeatedly showed slightly elevated blood pressure as well as blood and protein in my urine, classic signs of IgAN. These findings were attributed to the UTIs by my family doctor, even though the symptoms persisted for more than a decade. I trusted that if something was wrong, I would be told. I now know that was not the case.

Diagnosis at a turning point

In 2001, I was accepted into a master’s program in speech-language pathology. Because I was moving to a different city, I also had to find a new family doctor. A decision that changed my life. At my very first appointment, my new doctor completed a full physical, including a urinalysis.

When she found blood and protein in my urine and noted my high blood pressure, she immediately referred me for further testing. An internal medicine specialist then referred me to a nephrologist, who suspected IgAN. Within a month, I underwent a kidney biopsy and received my diagnosis.

Understanding the diagnosis

After I was diagnosed, my first challenge was simply understanding what IgA nephropathy was. At the time, the name sounded surreal to me. There was even a grocery store in Canada called IGA, and I remember wondering why a disease had the same name.

I was told I was at stage 1 and that my kidney function was still very good. I did not know the progressive nature of the disease. I had no visible symptoms, and I felt healthy and energetic. At the time, I took comfort in that. Looking back, I can see that denial and a lack of education gave me a false sense that everything was fine.

Navigating care and pregnancy

Soon after my diagnosis, I was referred to a community nephrologist. Because he had limited experience with IgAN, I received very little guidance about nutrition, lifestyle changes, or mental health support. That changed after my first pregnancy in 2006, which was complicated by preeclampsia and an emergency induction.

I was then referred to my current nephrologist, who specializes in IgAN. Although my second pregnancy in 2008 was also traumatic and again involved preeclampsia, I was monitored much more closely and received better care.

For the first time, I was given meaningful education about the disease, its progression, and the lifestyle and nutrition changes that could help me. I was also offered social support services. What was still missing, however, was the chance to connect with anyone else living with IgAN.

Finding community

Living with IgAN, or any rare disease, can be deeply isolating. It is hard for others to fully understand what you are experiencing unless they have lived it themselves. For more than 20 years, I did not meet a single other person with IgAN.

I finally met others with IgAN at a patient symposium hosted by the IgA Nephropathy Foundation. Through the Foundation, I found a community that feels like family. I later trained as an Ambassador and now serve as the Canadian Lead Ambassador.

Where I am today

My eGFR today is 20. Two years ago, I sat in my nephrologist’s office and, for the first time, broke down about the reality of my disease. My nephrologist encouraged me to make a plan, which meant beginning the search for a living kidney donor so that I would be ready when the time came. So I did.

It felt awkward to share something so personal, but I posted on social media and at least five people submitted applications to be considered as donors. In Canada, kidney transplants typically do not happen until eGFR drops to 15, so for now, I wait for that next stage.

What I would do differently

Looking back, there are several things I wish I had done differently:

• I wish I had asked more questions and pushed harder for answers when I first experienced symptoms as a teenager.
• I wish I had asked my first nephrologist for a referral to a dietitian. Earlier dietary changes may have helped improve my long-term outcome.
• I wish I had sought emotional and peer support sooner. Only recently have I realized how much that could have helped me cope with a chronic illness.

Today, my advocacy and patient support work is driven by ensuring that no one else has to go through this journey alone.