“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.”