Good night, I'm Brazilian and I was diagnosed with C3G. I ask for information about this rare disease, since in Brazil we have little information. I am 23 years old and my proteiunuria is less than 1.2 g. what is the progression of this pathology and are there chances to not reach its terminal phase? I am looking for group on facebook or instagram for more information.
facebook: facebook.com/pedro.lamonier
instagram: Phea10
Hello - I'm sorry to hear about your diagnosis. On Facebook, look for the group C3GN/DDD Warriors. There are people and caregivers from all over the world, it's a great source for information and shared experiences
Here’s a couple of links to Facebook groups.
My son was diagnosed with C3G Aug 2018- He Is on mycophenolate and was on a steroid therapy for 6 mos. as well as blood pressure medication. When we heard the news of his diagnosis we were shocked and overwhelmed. I like to tell his story because he is presently in remission. Although he could come out of remission at any time we remain hopeful and pray that he continues to stay in remission. I like to let people know that there is hope but there are so many out there that are suffering We pray for all those families. I highly recommend if you can go to the annual conference at the University of Iowa in the US, October 3-5, 2019. Dr. Richard Smith and his wife Lynn, Dr. Nester, MORL labs and many many others are making phenomenal strides in the research of treatment for this rare disease. Please look into it- C3G / DDD Family Conference- good luck to you . Also visit us at C3G warriors on FB
Michele McGrade
hello Michele, thank you so much for sharing your son's situation. I have submitted a request to the C3G Warriors group and have not yet been accepted. but already thank you for the affection and attention you had with me. Unfortunately the ticket to your country is very expensive and we are facing political problems. how does the question of enrolling for studies and thus getting treatment in your country.
Hi phea10, thank you for writing. I'm sorry to hear of your diagnosis. Please check the pinned posts on this site for information on C3G. Also, we have an Ask an Expert feature that you can use to ask general questions on C3G.
phea10, I just checked and you are now in the FB group.
Hi my name is Scott
treatment for my husband