Living with immune deficiency common variable

Overview

Common variable immune deficiency (CVID) is a condition in which your immune system cannot make enough antibodies—the proteins that help fight infections. This makes it easier for you to catch infections, especially in the lungs, throat, and ears. 'Variable' means the severity and health problems can vary a lot from person to person.

No, CVID is rare. It is thought to affect about 1 in 25,000 to 50,000 people worldwide.

CVID can affect anyone. Most people are diagnosed between ages 20 and 40, but children and older adults can also be diagnosed. It affects men and women equally.

Symptoms

Common symptoms

• Recurrent sinus infections
• Pneumonia or bronchitis
• Ear infections
• Digestive issues like diarrhea or bloating
• Fatigue
• Swollen lymph nodes or an enlarged spleen

Symptoms in children

• Frequent ear infections
• Sinus infections
• Pneumonia
• Poor growth or slow weight gain

Symptoms in older adults

• Repeated lung infections
• Fatigue and frequent infections mistaken for aging
• Chronic lung damage from untreated infections

Causes

Main causes

• Most cases are caused by changes (mutations) in genes that help the immune system work, but many people have no family history. The exact cause is often unknown.
• It is not caused by anything you did, and it is not contagious.

Risk factors

• A family history of CVID or other immune deficiencies (though most people have none)
• Having certain autoimmune conditions may be linked

When to see a doctor

See a doctor urgently if:

• If you experience severe symptoms like trouble breathing, confusion, or a high fever that won't come down, seek medical help same day or call your local emergency number.

Book a routine appointment if:

• If you keep getting serious infections, need multiple courses of antibiotics, or feel exhausted all the time, talk to your doctor.

Diagnosis

A doctor—usually an immunologist—will review your medical history and order blood tests to check your antibody levels and how well your immune system responds to vaccines.

Tests that may be done

• Blood tests to measure immunoglobulin (antibody) levels
• Vaccine response tests to see how your immune system reacts to immunizations
• Complete blood count to look at your immune cells
• A referral to a specialist in immune disorders

What to expect at your appointment

The process can take some time. You may need repeated blood tests. Be ready to tell your doctor about every infection you've had, how often they happen, and any family history.

Treatment

CVID cannot be cured, but it can be treated and managed. The main treatment replaces the antibodies your body does not make, and you may receive extra support for infections and complications.

Self-care at home

• Clean your hands often with soap and water or hand sanitiser
• Avoid close contact with sick people during cold and flu seasons
• Get enough sleep and manage stress
• Ask your doctor about a preventive plan for infections

Medical treatments

The main medical treatment is immunoglobulin replacement therapy—antibodies given through a drip or under the skin, usually every few weeks. Doctors may also recommend antibiotics to prevent or treat infections, and treatments for any complications such as lung or digestive problems. Treatments are chosen specifically for you, so always follow your care team's plan.

When is surgery considered?

Surgery is not a standard part of CVID treatment. But it may be needed for some complications, such as chronic sinusitis or lung issues. Your doctor will let you know if it applies to you.

Living with this condition

Living with CVID means being proactive about your health. You might need to plan ahead for trips, carry medical documents, and communicate with schools, employers, or family about your needs.

Lifestyle tips

• Stay as active as your energy allows
• Build a regular sleep routine
• Limit alcohol and avoid smoking
• Keep up with your scheduled medical visits

Diet and exercise

Eat a balanced diet with plenty of fruits, vegetables, and whole grains. Because your immune system is busy, follow safe food handling steps to avoid foodborne illness. Exercise lightly to steadily, and rest when you need to.

Mental health and emotional wellbeing

It can be stressful to live with a long-term condition. You might feel anxious about getting sick, or isolated if you miss out on social events. That is normal. Consider talking to a counsellor or a support group.

Prevention

CVID is a genetic condition, so it cannot be prevented. But many of the infections and complications can be prevented with good hygiene, medical care, and following your treatment plan.

Vaccines

Some vaccines are safe and helpful for people with CVID, but live vaccines (containing weakened germs) are usually not. Always check with your immunologist before getting any vaccine.

Screening programmes

If you have a family member with CVID, your doctor may suggest genetic counselling or testing, but routine screening for the general public is not recommended.

Complications

If left untreated

• By avoiding or delaying treatment, you could get more severe and repeated infections that can damage your lungs
• Autoimmune problems can develop, where the immune system attacks your own body
• Inflammation of the digestive tract may occur, causing weight loss and poor absorption of nutrients
• There is a higher risk of developing certain cancers, especially lymphoma

Long-term outlook

The outlook for CVID has improved greatly with modern care. With immunoglobulin treatment and regular check-ups, most people lead long, productive lives. Life expectancy is near-normal for many. The earlier you get care, the better you can protect your health.

Find support

International organisations

• International Patient Organisation for Primary Immunodeficiencies (IPOPI) ↗
• Immune Deficiency Foundation ↗

External links open third-party websites. Ruqelo Health is not responsible for external content. Listing an organisation does not imply endorsement.