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Living with CVID

Information, shared experiences and research connections for people living with CVID and those who support them.

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Understanding CVID

Common variable immunodeficiency (CVID) is a condition in which the immune system doesn't make enough protective antibodies, so infections happen more often.

The cause is unknown for most people, though gene changes are found in some; it is most often diagnosed in a person's twenties or thirties but can begin anytime from childhood to adulthood.

Signs & symptoms

CVID can look different from person to person. Signs the sources describe include:

  • Frequent infections of the lungs, sinuses and ears
  • Pneumonia
  • Diarrhea or trouble absorbing nutrients from food
  • Weight loss
  • Swollen lymph nodes or an enlarged spleen
  • Painful, swollen joints

Tell your care team about new or changing symptoms.

Diagnosis

  1. Health history

    A clinician asks how often you get infections, how they respond to treatment, and about digestive symptoms and family history.

  2. Blood tests

    Lab tests can show very low levels of immunoglobulins (antibodies) in the blood.

  3. Vaccine response

    Testing how well your body makes antibodies after vaccines can help confirm the diagnosis.

Care & treatment

Treatment
CVID is treated with immunoglobulin, antibodies from healthy donors given through a vein or under the skin, to partly restore antibody levels.
Infections
Bacterial infections are treated with antibiotics, and other problems linked to CVID may need treatment tailored to them.
Monitoring
Regular follow-up helps watch for lung problems, autoimmune conditions and certain cancers, which are more common with CVID.

Discuss benefits, risks and follow-up with your care team.

Everyday life

Good records can make care and follow-up easier.

  • Keep a log of infections, including dates, symptoms and any antibiotics you took.
  • Track your immunoglobulin treatment dates and how you feel between doses.
  • Ask your care team what precautions can lower your risk of infection.
Bring these questions to your next doctor visit
What tests will be used to confirm my diagnosis, and how long will results take?
What precautions should I take to reduce my risk of infection?
Should I see an immunology specialist, and how often should my lungs be checked?
Sources: NIH GARD — Common variable immunodeficiency · NIAID — Common Variable Immunodeficiency (CVID) · MedlinePlus Genetics — Common variable immune deficiency · NIAID — Talking to Your Doctor About Primary Immune Deficiency DiseasesPage drafted from NIH sources · Know Rare editorial review pending. General information to support conversations with your care team.

You are more than your diagnosis

Perspectives from people navigating life with CVID.

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Explore research for CVID

Explore actively recruiting CVID studies with HealthSpark.

HealthSpark

Find actively recruiting studies for CVID with HealthSpark. Share your city to explore research near you.

  • Phase 3 studies first, with nearest research center
  • Study information from ClinicalTrials.gov
  • Eligibility is confirmed by the study team

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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.

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HealthStory evolves private journaling with a living AI journal that talks back and asks thoughtful questions, helping you capture your CVID experiences more deeply and prepare for better conversations with your doctors and care team.

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