C3G help

[Dollys-4]

hi my partner has been told he has C3G. He’s now stage 4 Last GfR 18. What I would like to know is how this affects people My partner has not had many problems until now. Where he’s always cold tired and a bit confused worried Can’t find much information about this condition other than it’s an auto immune one. Any help advice is appreciated thanks. Helen x

[Myboy]

hi on Facebook you will find an excellent group called C3G warriors, I’ve learned so much from this group of people x

[Dollys-4 in reply to Myboy]

Thanks

[linfuller Ambassador]

Hi Helen,

As mentioned, the FB group is very active and also a good place to interact with other patients and learn about the disease.

C3G is caused by complement dysregulation. This is sometimes autoimmune, but can also be genetic. Most patients experience swelling and significant fatigue, but symptoms can vary quite a bit. Your partner’s symptoms sound very typical for kidney failure, which is to be expected as he nears stage 5. Is there a plan for dialysis? Or transplant? If the symptoms are concerning or bothersome, make sure you are communicating that with his doctor. He may need to be monitored more closely so he can start dialysis before things get too bad.

[Kokayeh]

hello, hope you are fine. It is normal for him to feel tired, swollen and depleted prior treatment. My daughter had all the symptoms and stayed a year on medications and supplements till we reached dialysis on Jan 2023. There is no cure till now for this diagnosis, only a bridge (dialysis) and ending with a kidney transplant.

Since the transplant takes time start the procedure as soon as possible, and hopefully he will find a matching kidney soon.

All the love and support

[Dollys-4 in reply to Kokayeh]

Thanks ☺️