Hello!

[linfuller]

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!

[DavidF_NKF Partner]

Hi Lindsey! Thank you so much for that compelling introduction; we are very lucky to have you in the community and look forward to your insights on C3G.

[linfuller Ambassador in reply to DavidF_NKF]

Thank you, David!

[saliff Ambassador]

Hi Lindsey,

Very happy to have you in the community. Your knowledge and transparency with your experiences is comforting to many. I am so glad to have met you and to call you a friend!

[linfuller Ambassador in reply to saliff]

Me, too! It's wonderful to have someone to just understand all the things that other people can't even begin to comprehend. We make a great team!

[KatrineM Ambassador]

Hi Lindsey!

Thanks for the introduction - and for being such a great support to us all.

[linfuller Ambassador in reply to KatrineM]

Hi Katrine! So glad to have you here!

[Vik95]

Hi. What are some of the other health issues you are experiencing that may be from complement system not functioning properly?

[linfuller Ambassador in reply to Vik95]

Hi Vik,

I experience what my doctors describe as a lupus-like syndrome, with a lot of inflammation & joint/muscle pain, & fatigue that seems to go beyond normal kidney disease fatigue. I was diagnosed with juvenile arthritis as a child, degenerative disc disease in my teens, & at 38 I’m affected by increasingly degenerative arthritis throughout my body. I also have some unexplained neurological symptoms, susceptibility to infections (even before immune suppression drugs), intestinal issues & malnutrition, overactive histamine responses, heart arrhythmia, skin issues, hormonal issues...a lot of which isn’t easily explained by the docs. It is hard to know what is from complement & what is not. I believe many of these problems to be rooted in inflammation, but who knows? It is difficult to manage symptoms when there is no way to know how or why they are occurring. Many of these problems we can demonstrate are real & are happening, but can’t find any causes. Which leads to the thought that with so much yet to learn about the role of complement in the body, that perhaps that is where the issue lies for some of these symptoms.

[Vik95]

My daughter started having GI issues about 2 years ago that gradually came on. Constipation and bloating and much discomfort. With that came skin breakouts. She has since become gluten and dairy free which has helped her. In addition she takes natural supplements including high dosage probiotics. When she was suffering from the constipation we had every test done by every doctor with no answers. That’s when we finally went the naturopathic route and she had improved about 75%. We think it was from having strep so often in her college years and being on antibiotics so often that it damaged her gut?! When she finally had her tonsils out and needed pain killers to recover from the surgery this is when her GI issues intensified. The recurring strep infection could’ve most likely been a by product of the complement 3 pathway misfiring. Her kidney dr is doing a clinical trial but she is not interested in being s guinea pig. I get it. She can’t risk her GI system to get worse and who knows what the side effects will be from an experimental drug. I will keep good thoughts coming your way and happy to hear you have a healthy son. Your son is just 1 year younger than mine! I sometimes worry about how pregnancy will be for my daughter when that time comes. She takes losartan daily to protect her kidneys by lowering protenuria. She’s been on it since she’s 14. Sometimes I wonder if that is what caused her GI system to become problematic.

[Dldant]

Hi Lindsay,

Thank you for your insight!!! How did you find out that your complement dysregulation was C3? I'd like to find out which of my husbands complement pathways are malfunctioning.

Also maybe we should try eculizamab. He's 46 and we are not done trying to fight this disease. If you don't mind my asking, where do you get treatment?