It's normal to feel scared when your doctor tells you or your child that you have a kidney problem, and at the same time, he or she tells you a long, complicated name like `Complement 3 Glomerulopathy`. This is called `C3G` for short. This is a rather rare kidney disease. Although this condition mostly affects children and young adults, it can actually develop at any age. So today, let's talk about this disease called C3G, as if we were talking to a friend, in a very simple way.
What is this C3G?
Simply put, C3G is a kidney disease caused by the "complement system", which is part of our body's immune system, not working properly. This complement system is like a police force that fights germs and bacteria that enter our body. However, in a person with C3G, this system's functioning is disrupted, and it starts to damage their own kidneys.
There are two main types of C3G disease:
1. Dense Deposit Disease (DDD)
2. C3 Glomerulonephritis (C3 Glomerulonephritis - C3GN)
Both types can be caused by genetic causes (perhaps hereditary) or other health problems that occur during life.
What causes this? What happens to the kidneys?
Think of our kidneys as tea filters. These filters are called glomeruli . These are what filter our blood, clean it, and remove unwanted waste products through urine.
In C3G disease, the aforementioned malfunction in the complement system damages these delicate filters called glomeruli. When this damage occurs, the pores in the filter enlarge, and proteins, as well as red and white blood cells, that should be in the blood, begin to leak into the urine. Over time, this damage can increase and even lead to kidney failure. Some studies show that DDD affects younger people than C3GN.
What are the symptoms of C3G disease?
Not everyone with C3G will experience the same symptoms. However, it is important to be aware of this. Let's look at the main symptoms.
| Symptom | A simple explanation |
|---|---|
| Protein in the urine (Proteinuria) | Excess protein in the urine. The urine may be foamy, cloudy, or dark. When this condition is severe (nephrotic syndrome), other symptoms such as swelling may also occur. |
| Blood in the urine (Hematuria) | Damage to the kidney filters causes red blood cells to accumulate in the urine. The urine may turn red, pink, or brown. |
| Edema | Because the kidneys are not working properly, fluid accumulates in the body, causing swelling in the legs, hands, ankles, and around the eyes. |
| High Blood Pressure | Increased pressure in the blood vessels due to fluid not being properly removed from the kidneys. |
| Fatigue and sleepiness | Because the kidneys don't filter waste products properly, they accumulate in the blood. This can affect the brain and cause fatigue, drowsiness, and difficulty concentrating. Kidney disease can also cause anemia, which can also increase fatigue. |
| Frequent Infections | A weakened complement system reduces the body's ability to fight germs, which can lead to frequent infections. |
| Eye Problems | Visual impairment can occur due to protein and fat deposits (drusen) in the retina. |
| Irregular deposition of fat in the skin (Acquired partial lipodystrophy) | The destruction of fat cells by the complement system can cause some areas of the body to become thinner, while other areas can become larger and have more fat deposited. |
In addition, symptoms such as nausea, vomiting, loss of appetite, insomnia, dry and itchy skin, a metallic taste in the mouth, and nighttime muscle twitching may occur in kidney failure .
How do you find this, Doctor?
The only way to definitively diagnose C3G disease is to have a kidney biopsy . This involves taking a small piece of kidney tissue under a light anesthetic and examining it under a microscope. This is the only way to determine the extent of damage to the kidneys.
In addition, your doctor may recommend blood and urine tests and possibly genetic testing.
What should I ask the doctor?
At a time like this, you may have many questions on your mind. Discuss these things clearly with your doctor. For example:
- How did I get C3G?
- What type of C3G do I have? (DDD or C3GN?)
- What are the best ways to manage my health with this disease?
- What treatment options do I have?
- What can I expect in the future with this disease?
What are the treatments for this?
To be honest, there is no single treatment that can completely cure C3G disease yet. However, there are several treatments that can control the disease, reduce symptoms, and reduce damage to the kidneys.
- Control blood pressure and protein excretion: Blood pressure medications (Angiotensin-converting enzyme (ACE) inhibitors and Angiotensin II type-1 receptor blockers (ARBs)) can reduce protein excretion in the urine and slow the progression of the disease.
- Cholesterol control: If you have high cholesterol (hyperlipidemia), research has shown that cholesterol-lowering medications can help control the worsening of C3G disease.
- Immunosuppressive drugs: A combination of drugs that suppress the immune system, such as glucocorticoids and mycophenolate mofetil (MMF), can prevent relapse in some patients.
- Modern treatments: Anti-complement drugs such as `eculizumab` can control the activity of the complement system and slow down the progression of the disease. In addition, a new drug called `iptacopan` is currently being studied. It has shown very promising results, so it has been approved to accelerate research on it.
How should I take care of myself?
Just like medications, how you take care of yourself is also very important in controlling this disease.
- Healthy diet: Eat lots of fruits, vegetables, legumes, and whole grains. Reduce saturated fat, salt, and sugar. Your doctor may tell you to reduce your potassium, sodium (salt), or phosphate intake. Never make any major changes to your diet without first consulting your doctor.
- Take care of your health: Even if you feel well, take your medications exactly as prescribed by your doctor. Tell your doctor about any other medications, vitamins, or supplements you are taking.
- Exercise: Physical activity can help you sleep better, boost your energy, and reduce your risk of heart disease. Talk to your doctor about an exercise plan that's right for you.
- Avoid smoking: This is very good for your overall health.
- Limit alcohol: Talk to your doctor about alcohol consumption and seek advice.
What can we expect for the future?
Once you are diagnosed with C3G disease, your medical team will help you find the best treatment plan.
In some cases, the disease can become severe. About 50% of people with C3G develop end-stage renal disease (ESRD) within 10 years of diagnosis. At this point, the kidneys' ability to remove waste products is completely lost. Dialysis or a kidney transplant may be necessary.
But it's important to remember that even after a kidney transplant, there is a high chance that C3G disease will recur in the new kidney. So talk to your doctor at length about the best option for you.
Your medical team may include a nephrologist, a hematologist, and a pathologist. It is important to maintain a good relationship with them.
Take-Home Message
- C3G is a rare but serious kidney disease caused by a defect in the complement system, which is part of the body's immune system.
- The main symptoms may include protein or blood in the urine, swelling, high blood pressure, and fatigue.
- The disease is definitively diagnosed with a kidney biopsy.
- Although there is no specific cure for this, the disease can be controlled and the kidneys can be protected by controlling blood pressure, medications that control immunity, and a healthy lifestyle.
- It is very important to stay in constant contact with your medical team and follow their instructions exactly.
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