Living with Autoimmune lymphoproliferative syndrome type 2B
A rare genetic condition with swollen lymph nodes, an enlarged spleen, and repeated herpes virus infections.
Understanding Autoimmune lymphoproliferative syndrome type 2B
It begins in childhood. Other features can include chronic diarrhea, slow growth, eczema, asthma, and repeated lung and sinus infections.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Swollen lymph nodes
- Enlarged spleen
- Repeated herpes infections
- Repeated sinus and lung infections
- Chronic diarrhea and poor weight gain
- Eczema and asthma
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.
- 3Consider genetic testing
Changes in CASP8 are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
- 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 Immune Deficiency Foundation
- 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
GARD says changes in the CASP8 gene cause this condition. It is autosomal recessive, meaning a child inherits a changed copy of the gene from each parent.
Also known as: alps with recurrent viral infections; alps2b; autoimmune lymphoproliferative syndrome caused by mutation in casp8; autoimmune lymphoproliferative syndrome type iib; autoimmune lymphoproliferative syndrome with recurrent viral infection; autoimmune lymphoproliferative syndrome with recurrent viral infections
Patient organizations
- Immune Deficiency FoundationPrimary immunodeficiency · United States
Broader rare-disease groups
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Autoimmune lymphoproliferative syndrome type 2B.
Explore research for Autoimmune lymphoproliferative syndrome type 2B
Explore actively recruiting Autoimmune lymphoproliferative syndrome type 2B studies with HealthSpark.
Find actively recruiting studies for Autoimmune lymphoproliferative syndrome type 2B 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 Autoimmune lymphoproliferative syndrome type 2B 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 Autoimmune lymphoproliferative syndrome type 2B
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 Autoimmune lymphoproliferative syndrome type 2B 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.