In 2004, our 13 year old son came home from school and told me that he passed urine that looked like Coca-Cola. Like any mother, I was confused and afraid. After speaking with my husband, I took him to our pediatrician only to learn that it could be strep that had gone on too long or possibly IgA Nephropathy (IGAN). He said there wasn't much to do for him. We admitted him to the hospital only to confirm what his pediatrician had said. The next 18 months were a roller coaster ride of doctor visits, 37 days of missed school, ACE inhibitors and steroids. My heart was broken watching my son fall apart in front of me. Being a proactive person I looked for a foundation to join and raise money to help find better treatments than steroids for my son.
To my dismay, there was not a patient organization for IgA Nephropathy patients. I decided to start one.
In 15 years, we now have thousands of patients that contact me. When I am contacted, I welcome and direct them to our Facebook support group. To date we have raised over $1 million for research. More importantly, we have brought attention to IGAN and the need for clinical trials.
With several IGAN Phase III clinical trials ongoing, this is a critical time for the IGAN community. Our mission is to support and fill these trials so patients can have a better quality of life. IGAN clinical trials are a challenge due to the unpredictability of the disease.
Dr Sean Barbour came to us a while ago sharing his research on the Risk Prediction tool in IGA Nephropathy and we were so excited to hear about his work. We endorsed this tool immediately knowing that this will help treatment decisions and clinical trial recruitment. This prediction model is now available and is providing more accurate risk stratification early after a patient’s diagnosis. Many clinical trials have failed to achieve primary end points due to inadvertently recruiting low-risk patients. The Risk Protection Tool promises to prevent this from happening again.
I am hoping that Nephrologists worldwide use this tool during this critical time of filling these ongoing trials to help my son and so many with IGAN. We are getting so close and I can speak on behalf of all my IGAN patients "We need you. Please help us cross the finish line!"