@kanaazpereira Thank you for asking me to join in. I was diagnosed with a very rare kidney disease in March 2015. In 1988 I was diagnosed with systemic lupus and had been producing abnormal amounts of protein since then. My doctors had been chalking up the problems with protein levels as a result of the lupus. Finally in 2014 my nephrologist thought there was something different, and needed further investigation. As they did the testing and eliminated possible situations, everything was sent to both Cedar-Sinai Hospital in Los Angeles and Keck USC School of Medicine. The renal pathologist there was hoping that it was not amyloidosis. Instead my disease is called Type 3 Collagenofibrotic Glomerulopathy. There have been less than 50 cases in the world diagnosed and I am the only one in the United States that they are aware of at this time with this condition. Unfortunately I do not have any information I can give you on amyloidosis.
Ginger

Sorry for the delay, didn’t see your response until now. She is doing pretty darn good considering. She has had a kidney biopsy and a bone marrow biopsy and we have an appointment on the 7th to hear where she is at and to what degree the AL is has spread. We also have an appointment with the cardiologist this week to find out how much involvement in the heart. She is scared but wants the cards on the table so we can move forward with treatment. I want too say that this site has been invaluable for me and am thankful for what you all do.