Hello, everyone!
I was diagnosed with C3GN almost five years ago at age 33. My C3GN is hereditary, which is extremely unusual. Many of my family members have been affected, including my father and my son. My father went through four kidney transplants before passing away. My son is thirteen, and his kidney function is normal and stable without treatment for the moment (we are grateful!!) . Although I had reached stage 4 kidney failure at one time, I am currently on eculizumab and my native kidneys are doing well at stage 2. I have been on this treatment for a little more than two years.
My C3GN is believed to be caused by a mutation in C3 that has not been documented before. This is what makes the disease hereditary in my family. I also have a lot of non-kidney symptoms and health issues, many of which are suspected to be related to my complement system not functioning correctly. I have also been diagnosed with macular drusen, which is known to affect some C3G patients.
Although I was diagnosed as an adult, I began showing symptoms as a child. With my family history and range of symptoms, doctors were puzzled. I was misdiagnosed several times. For most of my life, I have struggled to find adequate medical care.
I help to admin a Facebook group for C3G (C3G Warriors), and we have created a very active and supportive family. We encourage all patients and caregivers to join us if you haven't found us yet!
While some of my experience is not typical of most C3G patients, I have been living with this disease my entire life and in a lot of different roles. I am very open about my experiences and happy to share with other patients and families. I can't wait to see everything this community will offer patients!