Choosing Positivity with IgAN

I was diagnosed with IgAN after months of battling with unexplained symptoms.

Finding relief in an IgAN diagnosis

By the time I finally read the words “IgA nephropathy” on my pathology report, I was so desperate for answers that learning I had a rare, incurable disease felt like a relief. It sounds ridiculous, but it was a drastic improvement from not knowing what was happening in my body.

I’m usually an optimistic person, but learning to live with a chronic illness changed everything, so I have to work hard every day to stay positive about my future and my health.

Why community is the heart of my IgAN journey

Building a community has been the important part of my healing journey by far. I am always so encouraged and uplifted by other people who live with IgAN, and some of my closest friendships have come from the connections I’ve made with other patients.

By connecting with other patients, I’ve gained so much perspective about the disease itself, the many ways it impacts people, and how we can overcome the struggles we face because of kidney disease. Amazingly, meeting people who have experienced kidney failure has improved my outlook tremendously. What I once considered worst-case scenario is someone else’s reality, and I try my best to honor those people by being empowered by their stories.

From listening to sharing: Finding my voice

I began by joining support groups and listening to other patients talk about their journeys with IgAN. Before long, I felt comfortable enough to share my own story. I’ve had strangers reach out to me and say they’ve found consolation in hearing some of the similarities between my experiences and their own.

Now, I volunteer with different kidney disease and rare disease advocacy organizations, and I’ve even had opportunities to share my story at the US Capitol to help generate positive changes in healthcare policy. This is something that anyone can do at any stage of their IgAN journey. Every story is unique and valuable, and every person has a strength they can use to support and inspire others.

Looking for the helpers: Progress in IgAN research

My childhood icon Mr. Rogers famously said to “look for the helpers” in times of trouble. When I think about who the “helpers” are when dealing with IgAN, my mind goes straight to the researchers who are hard at work trying to find a cure.

In the nearly four years since I was diagnosed, so much has changed in the way that IgAN is treated. At the time of my diagnosis, there was only one FDA approved treatment for IgAN on the market. Now, we have five different IgAN-specific drugs available in the US, and dozens more still in development. Some of these treatments are even disease-modifying, meaning that they have the potential to stop IgAN in its tracks.

Choosing courage and hope over fear

When I think about how far we’ve come and how much further we’ll go, it gives me so much hope and reassurance. It’s an important reminder that patients aren’t alone in the fight. We have each other, but we also have researchers, scientists, and medical professionals on our side.

As patients, we don’t have to be unafraid, but we do have to be courageous. We must stay grateful for the little things, and we must find reasons to be hopeful. When possible, we should give back in whatever way we are capable. Life with chronic illness doesn’t have to be negative and daunting. We have a new opportunity at every turn to look on the bright side, and the more often we do, the easier it gets. Not every day is perfect, but if we’re determined and we stick together, we can overcome anything with strength and resilience.