Navigating life with C3G or primary IC-MPGN
You are not alone
Having C3G or primary IC-MPGN understandably raises questions about why these diseases occur. While we know they result from an overactivated complement system, the exact cause often remains unknown in many cases.
Despite these uncertainties and challenges, managing C3G or primary IC-MPGN is possible by staying informed. While a kidney transplant may restore function for some, it won’t cure the cause of these diseases.
Staying connected with your care team and accessing reliable resources can help you manage C3G and primary IC-MPGN while staying informed about what the future holds.
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The impact of C3G and primary IC-MPGN goes beyond physical symptoms
Patients
Fatigue and other symptoms from C3G or primary IC-MPGN can cause missed work or school, frequent medical appointments, and missing out on social activities.
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Caregivers
Supporting those with C3G or primary IC-MPGN can take an emotional, financial, and social toll, requiring time for appointments and care coordination.
Watch how Chase and his mom navigate life with C3G
Treatment approaches are urgently needed to manage these rare diseases effectively
Current management approaches are limited in their ability to directly treat C3G and primary IC-MPGN
- While certain medications and dietary changes help manage some of the symptoms of C3G and primary IC-MPGN, they do not work on the cause of these diseases
- Current medications help control blood pressure, manage high protein levels in the urine, and reduce inflammation
- Because current treatment approaches do not work on the cause of C3G and primary IC-MPGN, the complement system remains overactivated, causing excessive breakdown of C3 into fragments that can build up in the kidneys. This leads to ongoing inflammation and damage, which can cause kidney function to decline over time, potentially resulting in the need for dialysis and/or a kidney transplant
Because C3G and primary IC-MPGN are rare, complex, and limited to symptom management, it is clear that more research and work need to be done
A kidney transplant can restore function but is not a cure
For those living with advanced C3G or primary IC-MPGN, dialysis may become necessary when the kidneys can no longer effectively function. While dialysis can help manage kidney failure, it’s often a temporary measure, with many eventually considering a kidney transplant as the next step.
Almost 9 in 10 people with C3G or primary IC-MPGN see their disease return after a kidney transplant because the underlying cause—complement overactivation—remains
- The complement system can stay overactivated and continue to create a buildup of C3 fragments, causing injury in the transplanted kidney
People who receive a kidney transplant are often prescribed multiple, daily medications that are required to:
- Prevent transplant rejection
- Continue to manage symptoms of C3G or primary IC-MPGN
Life post-transplant presents its own challenges with frequent monitoring and maintenance of the transplanted kidney
