Hear from People Who Understand
Living with a rare and invisible disease like IgAN can feel isolating. Connecting to the community may help. Hear from Chris, Elle, and the IgAN Connectors, as they open up and share their stories about living with IgAN.
I was only 18 and I felt great. Like many 18-year-olds without any health issues, I was working out, I had just passed boot camp with flying colors, and I felt like I was in the prime of my life. Then to have this disease come out of the blue and tell me that I am sick was earth-shattering for me.
I went through ultrasounds, urine tests, and a biopsy to ultimately determine that I had IgAN. At that point, doctors were telling me that it would only be 5 to 10 years before I progressed into kidney failure. It put me in a very dark place. Thankfully, my mom was there to support me and help me make sense of it all. She really picked me up and set me straight and found resources like the IgA Nephropathy Foundation, where I first met other people with the disease. She found me a good nephrologist who knew about IgAN. And those two things were crucial for me in starting this new chapter of my life.
Having IgAN is tough, but at the same time, I think there are a lot of good things that have come from it. I’ve been able to make a lot of great friends and find a community that really understands me. So there is definitely a silver lining to it all. But it’s not always easy. It’s been strange and sometimes confusing to find out what works best for me. How do I explain to people on dates that I don’t drink? How can I tell my coworkers that I need a day off to see my doctor when I look completely healthy? I always ask myself, should I have kids? What if I’m a sick dad one day? These types of questions will always come up, but by talking to my doctor and this community, I feel like I’ve finally started to get a handle on how to work through these situations.
It’s been 9 years since my diagnosis, and I can’t believe how much I’ve learned about this disease and myself. I’m now 27 and work with advocacy groups to help other people living with IgAN find the tools they need to manage their lives. One piece of advice I have for someone newly diagnosed with IgAN is to get connected to the community and not battle this alone because we have made so much good progress in treatment options, education, and community resources. This is not something that you have to go through alone, and you can save yourself a lot of trouble, stress, and potential negative impacts on your health by getting involved earlier on in your kidney journey.
Chris is a real person living with IgAN
Chris was compensated for his time.
Elle is a real person living with IgAN
Elle was compensated for her time.
I was 26 years old when I was rushed to the hospital and diagnosed with kidney failure caused by IgAN. When I found this out, it answered one question, but a million new ones followed. Two years before this, I was diagnosed with kidney failure. I had been having symptoms and wasn’t feeling well. I had a lot of unexplained fatigue and a lot of swelling in my legs and face.
I didn’t know how IgAN would affect my life or what I needed to do. I think one of the surprising things that hit me was the mental health piece because I was just so busy trying to deal with my physical . I decided that I didn’t want other people to feel alone or go through what I went through. This inspired me to get into the mental health field, and today, I’m a licensed therapist. I’m so excited to work with people who are going through a similar experience to let them know that they’re not alone and that anxiety and depression can be a very normal part of living with IgAN and other rare diseases.
Reflecting back on the last 14 years, I’m so proud of myself for not giving up or letting IgAN or kidney failure stop me from living my life. At the time I was diagnosed, I felt very helpless and weak and that I couldn’t handle it, but I’ve discovered that I am so much stronger than I thought. Living with IgAN has helped me find my passion for mental health. I’m so grateful that I get to work with other people living with chronic diseases to help them understand that they are not alone.
In the summer of 2019, I was diagnosed with IgAN. My son was 6 years old at the time, and he is my world. I think that’s why it was easy to write off some of the symptoms I was having, like fatigue, swelling of my legs, and lower back pain, as just another one of the joys of parenthood. After a while, it got harder to ignore, and my nephrologist admitted me to the hospital because my kidney function was declining quickly. knew at that point that everything was going to change.
I was sent home with limited information and treatment that only addressed my symptoms, not my disease. It was hard to face my new reality of living with a chronic, rare autoimmune disease. A lot of times, when you live with something like this, the people around you will tell you that they get it. They will say that they understand it, but it’s really hard to understand it unless you’re going through it.
I know it can be very challenging to find one doctor that’s amazing. It’s almost impossible to find a whole team of doctors that’s amazing. I have my unicorn medical crew, and they work so well with each other. And it’s not just about who the best doctors are, it’s about who the best doctors are for me. My rule is that any treatment decision has to get approved by my nephrologist first. Like most doctors, he is very busy. So he sent me to do my own research on treatment options and things that I can do to help my health. We always sit down and talk about it. I email him pretty regularly, at least once or twice a month.
I’m most proud of being able to take control of my health because I want to be an active mom. I want to be the mom that can volunteer at my son’s school. I want to be the mom that can take him to a park and play and chase him around. I want to be there when he goes to prom. I want to be there when he falls in love, graduates high school, and goes to college.
I made a choice to make major lifestyle changes. I can’t control what my body decides to do, but I can control what goes into my body. I remember the day very clearly. My husband and I were sitting in a kidney disease class, and I looked at him and said, “I don’t want to go on dialysis. If I can avoid dialysis for as long as possible, I want to do it.” So I made changes. I left my job to reduce my stress. I switched to a plant-based diet, and I had appointments with my nephrologist every 3 months to talk about my options and check my kidney function.
Every day, I learn more about IgAN and how it impacts my life. But I feel better than ever about my ability to manage this disease and that I don’t have to fight it alone. I started a social media account that allows me to connect with other people living with IgAN. Together, we talk through obstacles that we face. I’m proud to be an IgAN and to raise awareness for this chronic autoimmune disease using my voice.
Judy is a real person living with IgAN
Judy was compensated for her time.
Living with IgAN can impact many different parts of your life.
Listen in as the IgAN Connectors discuss their experiences on different topics.
Living with IgAN can impact many different parts of your life.
Listen in as the IgAN Connectors discuss their experiences.