Living with Severe combined immunodeficiency disease
A group of inherited immune conditions in which T cells and B cells do not work properly, causing repeated infections.
Understanding Severe combined immunodeficiency disease
Common signs include repeated infections, such as ear infections, pneumonia, bronchitis, oral thrush, and diarrhea. Because of repeated infections, children do not grow and gain weight as expected. It can be caused by changes in any of several genes. The most common type is X-linked SCID, and another is caused by adenosine deaminase (ADA) deficiency.
Signs & symptoms
GARD doesn't list a symptom list for this condition. Its summary describes these:
- Repeated infections
- Ear infections
- Pneumonia or bronchitis
- Oral thrush
- Diarrhea
- Poor growth and weight gain
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include allergy and immune system specialists and genetic specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Immune Deficiency Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Allergy and immune system specialists (allergists / immunologists); Genetic specialists (geneticists)
- Expert care
- Expert lists: Immune Deficiency Foundation
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Jeffrey Modell Foundation and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
It can be caused by changes in any of several genes. It is inherited in an X-linked recessive way most commonly, or an autosomal recessive way.
Also known as: combined t and b cell inborn immunodeficiency; combined t-cell and b-cell immunodeficiency; immunodeficiency, severe combined; scid; scid - severe combined immunodeficiency; severe combined immune deficiency
Patient organizations
- Jeffrey Modell FoundationSevere combined immunodeficiency disease · United States
- SCID FoundationSevere combined immunodeficiency disease · Immune Deficiency Foundation
You are more than your diagnosis
Perspectives from people navigating life with Severe combined immunodeficiency disease.
Explore research for Severe combined immunodeficiency disease
Explore actively recruiting Severe combined immunodeficiency disease studies with HealthSpark.
Find actively recruiting studies for Severe combined immunodeficiency disease with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
Powered by HealthSpark, our AI chat helper
I can help you find recruiting Severe combined immunodeficiency disease studies. Enter a ZIP code, address or city below and I'll look within 50 miles.
Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
Get Signals for Severe combined immunodeficiency disease
Stay in the loop with community stories and updates from medical researchers.
Create a living journal that talks back
HealthStory evolves private journaling with a living AI journal that talks back and asks thoughtful questions, helping you capture your Severe combined immunodeficiency disease experiences more deeply and prepare for better conversations with your doctors and care team.
Your journal is private. Sharing your story publicly is a separate choice, made with Share your story above.