Patients

“At the age of 14, I was rushed to the emergency room after having coca cola colored urine. It took six months of various testing to eventually be diagnosed with IgA Nephropathy via kidney biopsy. The doctors told my parents and me that there was no cure, no proven treatment and that this disease would likely lead to kidney failure in 20 to 25 years. This was very upsetting and also left the family with a lot of unanswered questions.

I felt completely overwhelmed and also confused. Pre-internet and social media it was really hard to process what was happening. When I was 30, I was rushed to the emergency room with flu-like symptoms. The doctors flagged GFR and creatinine levels. I was put on a course of meds to help with proteinuria and to treat high blood pressure.

At the age of 38, I reached end stage kidney failure requiring a kidney transplant. Luckily I was able to receive a pre-emptive transplant from a living donor—my brother. From time of diagnosis, it has impacted every decision in my life because there is so much we still don’t know about the disease. It’s extremely frustrating to have a disease that can not actually be treated. You only treat the symptoms. Even getting my transplant was a form of treatment.

Today, I am a huge advocate for living donation and I volunteer with The IgA Nephropathy Foundation as their Director of Brand & Creative. I look forward to being “in the room where it happens” as the Foundation is working hard with several pharmaceutical partners to not only find a treatment but a cure for IgA Nephropathy. Social media has really galvanized the community and with the help of the IgA Nephropathy Foundation our voices and concerns are being heard.”

For 25 years, I unknowingly lived with IgA Nephropathy until I found a physician who noticed that my blood work indicated that I had some form of kidney disease. When I received the initial diagnosis, I was scared. The doctors did not offer much information about IgAN and there was no known treatment. To know that you have a disease that has no cure or treatment is very scary and it was a very emotional day.

I was able to manage my IgAN through diet and steroids until 2017 when my kidney function declined to 19 percent. At that time, I began my transplant journey. It was a very anxious time in my life not knowing if I would be able to find a donor or if I would have to go on dialysis. Almost two years later, I received a living donor kidney transplant through a paired exchange.

Living with IgA Nephropathy is a game-changer, and it will impact everything from what you eat to how you feel mentally every day.

Since my diagnosis, a lot has changed in the IgA Nephropathy community, and we need to work to continue to move the needle to find a cure and a treatment for this disease. The IgAN Foundation has done a great job working collaboratively with the pharmaceutical industry.

I am much more hopeful today than I was when I received my diagnosis. I have found many new friends in the kidney community, and hopefully sharing my story will help inspire others who have IgAN or who might need a transplant.

When I was diagnosed, I was terrified. I was young so I did not really know what was going on, besides the fact that I am sick, and I am not going to get better. All I really remember is being scared and seeing my parents so scared and hurting. The hardest part about going into kidney failure back in 2017 was having to go on prednisone because that took a good portion of my childhood away.

I am a 17-year-old high school junior from New Hill, NC. I love all things Disney, Grey’s Anatomy, Criminal Minds, dancing and hanging out with friends. I would like to be an FBI profiler someday.

I was diagnosed with IgA Nephropathy at age eight. When I was 13 years old, my kidneys started their downward spiral. I went into nephrotic syndrome and was treatment resistant after trying a variety of medications. At the age of 16, I went into remission and my kidneys are now doing great.

Having this disease has not been easy. There have been a lot of ups and downs like going on prednisone, and the constant doctors’ appointments, but it has taught me a lot about not taking anything for granted. I have learned how valuable people and things can be, and to cherish every moment in life.

I am a fighter and am determined to make changes. Together with my mom Carrie, I have been to Washington, DC, to speak with senators and representatives about codifying the Living Donor Protection Act into law as well as get funding and support for the new research program Kidney X.  I love advocating for myself and others with this disease.

In the future I really hope there is a cure. Finding a cure to this disease will not be easy and it will take time, but I hope that eventually there will be one. Even if the cure is not around during my lifetime, I hope it will be in the future because I do not want other kids to have to go through the things I have been through in my past. During my lifetime, I hope there is a treatment that can prevent me from needing a kidney transplant. It is a big goal but hopefully there will be a treatment available to patients that can prevent transplants due to this disease.

“My creatinine levels were off the charts. That’s when I saw my first nephrologist, who told me I had kidney failure from IgAN and needed to start dialysis.

I underwent dialysis for a year – three hours per visit, three times per week. When not on dialysis, I was in bed. I had to stop going to school. Even a simple task like grocery shopping would leave me with no energy to bring the groceries in from the car. At the time, I was very resentful. I felt like I’d been doing everything right and couldn’t understand why this was happening to me.

I received my first kidney transplant from my mother at age 23. Although my body initially rejected it, the kidney eventually acclimated to my body and lasted 13 years – which is considered a success! I finished college, got married, got a job at a prestigious preschool, and had my “miracle baby,” Griffin. Soon after my son was born, my kidney function began to decline. About five years later, I had my second kidney transplant, this time from my brother-in-law.

I’m fortunate that my second kidney has been a great one so far! However, being a transplant recipient means I can no longer do some of the things I love. I’ve been teaching for 20 years – every age from babies to college students – and pre-COVID, I ran a successful preschool in Santa Monica, California. I truly believe I was born to be a teacher. I currently teach a college class on Zoom, but unfortunately, I can’t be in a classroom full of children right now and that breaks my heart.

My son, Griffin, is my world. We love to travel together – we’ve been to Iceland, The Netherlands, Spain, Italy and the Philippines, just to name a few countries. If I could say anything to the scientists and clinicians who are pursuing a cure for IgAN, I would want them to know his name – to know that that any progress they make will allow me to secure more years with him.”