Nephrotic syndrome awareness

Overview

Nephrotic syndrome is a kidney disorder where the tiny filters inside your kidneys (called glomeruli) become damaged and leak large amounts of protein into your urine. This causes protein levels in the blood to drop, leading to swelling (oedema) in different parts of the body, especially around the eyes, feet, and ankles.

Nephrotic syndrome is not very common. It affects about 2 to 7 children per 100,000 and 3 to 5 adults per 100,000 each year.

Nephrotic syndrome can affect people of all ages, but it is most common in children between the ages of 2 and 6 years. In adults, it occurs more often in people over 40.

Symptoms

Common symptoms

• Swelling around the eyes, especially in the morning
• Swelling in the feet, ankles, or legs (pitting oedema – when you press the skin, it stays indented)
• Foamy urine (like soap bubbles) due to protein in the urine
• Weight gain from fluid retention
• Feeling tired or weak

Symptoms in children

• Same swelling signs, often starting around the eyes
• Irritability or loss of appetite
• Less energy for playing or normal activities

Symptoms in older adults

• Gradual swelling in legs and around the eyes
• Shortness of breath or breathing difficulty (if fluid builds up in the lungs)
• Fatigue and muscle weakness
• Increased risk of blood clots

Causes

Main causes

• Damage to the kidney’s filters (glomeruli) from conditions like minimal change disease, focal segmental glomerulosclerosis, or membranous nephropathy.
• Some people develop nephrotic syndrome as a result of other illnesses, such as diabetes, lupus (an autoimmune disease), or infections like hepatitis.

Risk factors

• Having a family history of kidney disease or autoimmune conditions
• Certain infections (e.g., strep throat, hepatitis B, HIV)
• Taking certain medications (e.g., non-steroidal anti-inflammatory drugs or some antibiotics) – always speak to your doctor before stopping any medicine
• Having another health condition like diabetes or lupus

When to see a doctor

See a doctor urgently if:

• If you notice sudden, severe swelling in your face, hands, or legs
• If you have trouble breathing or chest pain
• If you have a high fever or other signs of infection

Book a routine appointment if:

• If you have swelling around your eyes or ankles that doesn’t go away
• If your urine looks foamy or is darker than usual
• If you feel very tired or gain weight without changing your diet

Diagnosis

Your doctor will start with a physical exam and ask about your symptoms and medical history. They will usually order urine and blood tests to check for protein and other signs of kidney damage.

Tests that may be done

• Urine test (urinalysis) to measure the amount of protein in your urine
• Blood tests to check levels of albumin (a protein), cholesterol, and kidney function (creatinine, GFR)
• Sometimes a kidney biopsy, where a tiny sample of kidney tissue is taken with a needle to find the exact cause

What to expect at your appointment

If nephrotic syndrome is suspected, your doctor will refer you to a kidney specialist (nephrologist). You may need regular check-ups and repeat tests to monitor how well your kidneys are working. The process can take a few weeks, but the team will keep you informed at every stage.

Treatment

Treatment for nephrotic syndrome focuses on reducing protein leakage, managing swelling, and treating the underlying cause. Many people need a combination of medications and lifestyle changes. Your doctor will create a plan tailored to your specific situation.

Self-care at home

• Follow a low-salt diet to help reduce swelling and fluid retention
• Limit how much fluid you drink if your doctor advises you to
• Avoid using non-steroidal anti-inflammatory drugs (like ibuprofen) unless your doctor says it’s safe
• Weigh yourself daily and check for new swelling – tell your doctor if you gain weight quickly
• Get enough rest, but try to stay gently active as recommended

Medical treatments

Your doctor may prescribe medications to lower blood pressure (like ACE inhibitors) to reduce protein loss in urine, diuretics (water pills) to help remove excess fluid, and steroids or other medicines that calm the immune system to treat inflammation in the kidneys. In more serious cases, other treatments such as immunosuppressants may be used. Always take medications exactly as prescribed and discuss any concerns with your healthcare team.

When is surgery considered?

Surgery is rarely needed for nephrotic syndrome itself. However, if the condition leads to kidney failure, you might need treatments like dialysis or a kidney transplant. Your doctor will explain all options if this becomes necessary.

Living with this condition

Living with nephrotic syndrome means keeping a close eye on your symptoms, sticking to your treatment plan, and attending regular check-ups. Most people can lead a normal life with the right support. It helps to work closely with your healthcare team and tell them about any changes.

Lifestyle tips

• Eat a balanced, low-salt diet – your doctor or a dietitian can give you personalised advice
• Stay active with gentle exercise like walking or swimming, but avoid overdoing it when you feel tired
• Prevent infections by washing hands often and avoiding contact with sick people
• Keep stress under control – relaxation techniques like deep breathing can help
• Tell your doctor before taking any over-the-counter medicines or supplements

Diet and exercise

A low-sodium (salt) diet is recommended to reduce swelling. Your doctor may also ask you to watch your protein intake – not too little, not too much. Drink fluids as advised, and try to include foods rich in vitamins and minerals. Gentle exercise like walking helps maintain strength and mood, but listen to your body and rest when needed.

Mental health and emotional wellbeing

Dealing with a chronic condition can be stressful and may cause anxiety or low mood. It’s normal to feel worried, but you don’t have to face it alone. Talk to your doctor about how you’re feeling – they can connect you with counselling or support groups. Remember, treatment is often very effective, and many people with nephrotic syndrome live full lives.

Prevention

In many cases, nephrotic syndrome cannot be prevented, especially when it’s caused by an underlying condition or has no clear trigger. However, managing other health problems (like diabetes and high blood pressure) can help reduce your risk. Avoiding medicines that can damage the kidneys (unless prescribed by a doctor) is also wise.

Vaccines

Staying up to date with vaccines, such as the flu shot and pneumococcal vaccine (which protects against pneumonia), is important because nephrotic syndrome can increase your risk of infections. Ask your doctor which vaccines they recommend for you.

Screening programmes

There is no routine screening for everyone. But if you have a family history of kidney disease or other risk factors, your doctor may check your urine and blood pressure regularly. Talk to your doctor if you’re concerned about your kidney health.

Complications

If left untreated

• Kidney damage that can lead to chronic kidney disease or kidney failure
• Serious infections, especially if you are on medications that suppress the immune system
• Blood clots (deep vein thrombosis or pulmonary embolism) due to loss of proteins that prevent clotting
• High cholesterol and other lipid problems, which can increase the risk of heart disease
• Malnutrition from losing too much protein

Long-term outlook

With early diagnosis and proper treatment, most people with nephrotic syndrome have a good outlook. Children often grow out of it and have no lasting problems. Adults may need long-term management, but many can keep the condition under control and enjoy a good quality of life. Your healthcare team will be there to support you every step of the way.

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