Rare Disease Roadmap: C3 Glomerulopathy
- Health Topics
- Kidney and urinary tract health
- Kidney disease and failure
- Rare Disease Roadmap: C3 Glomerulopathy
Journey Overview
Complement 3 glomerulopathy (C3G) is a group of rare disorders that damage the filtering units inside the kidneys, called the glomeruli. Damage to these filtering units can cause blood and protein in the urine, edema (swelling caused by a buildup of fluid), high blood pressure, recurrent infections, fatigue, and problems concentrating. C3G occurs as a result of dysregulation in a part of the immune system called the complement system. C3G can be caused by inherited or acquired genetic mutations, or the cause may not be known. If you or a loved one is living with C3G, this guide provides information to help you better understand the healthcare providers that you will work with, the questions you should be asking at appointments, and how C3G can be managed.
Your Comprehensive Care Team
People who are living with C3G will work with a team of healthcare providers with different specialties. This team can include:
Nephrologist
A person diagnosed with C3G will work with a nephrologist, a medical doctor that specializes in diseases that affect the kidneys. Nephrologists are sometimes called “kidney doctors.” This specialist will oversee treatment and coordinate with other members of a healthcare team.
Primary Care Provider
Your primary care provider is the healthcare provider you see for checkups, care when you are sick or injured, and preventive care like vaccinations. This provider may be an MD (Doctor of Medicine), DO (Doctor of Osteopathic Medicine), Nurse Practitioner (NP), or Physician Assistant (PA).
Renal Dietitian
People with C3G should follow a kidney-friendly and heart-healthy diet, monitoring their intake of sodium, protein, and fats. Nutrition is also important for maintaining a healthy weight. You may work with a registered dietitian that specializes in kidney disorders, called a renal dietitian.
Additional Members
Nurses play an important role in treatment, including education on treatment and managing medication regimens. People living with C3G may also work with specialists to manage complications caused by C3G, such as a cardiologist or an ophthalmologist (eye doctor).
C3G Treatment Options
- Treatment will depend on the cause (if a cause can be identified) and the severity.
- Medications to control blood pressure, protein in the urine, edema, and cholesterol can help slow the progression of kidney damage.
- In some cases, immunosuppressive drugs and/or corticosteroids may be recommended.
- Changes to diet and other lifestyle modifications may be recommended.
- If C3G progresses to end-stage kidney failure, it will need to be treated with dialysis and/or kidney transplantation.
C3G is a rare condition, and it’s important to work with healthcare providers who are experienced in treating rare kidney diseases. It’s also important to learn as much as you can about your diagnosis, your kidneys, and the medications you are taking for C3G.
The Conversation: Questions for Your Healthcare Team
Good communication with your healthcare team will help you get the most from treatment. Keep a symptom journal. Prepare for your appointments by writing down a list of questions and topics you want to cover. The questions below can help you get started.
- What are the most important things for me to know about my diagnosis?
- What numbers are important for me to know? Ask your provider to explain these terms and your test results:
- Glomerular filtration rate (GFR)
- Urine albumin level
- Blood pressure
- What treatment do you currently recommend? Ask these questions for every therapy you are prescribed.
- Why do you recommend this treatment?
- How does this treatment work?
- What is the goal of this treatment?
- How long will I be on this treatment?
- What are the potential side effects?
- What can I do to prevent damage to my kidneys?
- How will C3G affect my day-to-day life? (For example, work and exercise).
- Are there other healthcare providers I should be working with?
- Will you communicate with my other healthcare providers? Ask what you can do to ensure that your primary care provider and any specialists you are seeing are up to date on your diagnosis and treatment.
- Can I have copies of my lab reports and pathology reports?
- Who can I talk to if I’m concerned about the cost of treatment?
- What new symptoms, changes in symptoms, and complications do I need to watch for?
- When do I need to call you?
- When do I need to seek emergency care?
- Where can I learn more about C3G?
Your appointment is an opportunity to learn more about your diagnosis. If you have a question, ask. If something isn’t clear, ask for an explanation.
Join the Social Conversation:
#c3g #complement3glomerulopathy #kidneydisease #rarekidneydisease #kidneydiseasetreatment
More Information for Patients and Caregivers
Article
C3 glomerulopathy: symptoms, diagnosis and treatmentLearn what’s happening in the immune system and the kidneys when a person has this rare renal disease.
Article
What are the complications of C3 glomerulopathy?For anyone living with C3 glomerulopathy, preventing these complications will be an important goal of treatment.
Article
Strategies for coordinating care for C3GStrategies to promote good communication among the different members of your healthcare providers for C3G.
