Living with Cold agglutinin disease
A rare blood condition where the immune system destroys red blood cells, which can cause tiredness and pale skin.
Understanding Cold agglutinin disease
In the cold, the immune system makes antibodies that clump red blood cells together. The cells are then destroyed too early, which leads to anemia (too few healthy red blood cells). It usually starts in adulthood. It can have no known cause (primary) or follow another condition such as an infection, an autoimmune disease or certain cancers (secondary).
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Tiredness (fatigue)
- Muscle weakness
- Pale skin (pallor)
- Joint pain
- Anemia from red blood cell breakdown (hemolytic anemia)
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 blood and bone marrow specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Autoimmune Association, Cold Agglutinin Disease Foundation and Global Autoimmune Institute may keep lists of experts for this condition.
Care & treatment
- Care team
- Blood and bone marrow specialists (hematologists)
- Expert care
- Expert lists: Autoimmune Association, Cold Agglutinin Disease Foundation, Global Autoimmune Institute
- 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 Autoimmune Association 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
The cause can be unknown (primary) or an underlying condition such as an infection, another autoimmune disease or certain cancers (secondary).
Also known as: cad; cas; chronic cold agglutinin disease; cold agglutinin syndrome; cold antibody disease
Patient organizations
- Autoimmune AssociationCold agglutinin disease · United States
- Cold Agglutinin Disease FoundationCold agglutinin disease · United States
- Global Autoimmune InstituteCold agglutinin disease · United States
- wAIHA WarriorsCold agglutinin disease · United States
You are more than your diagnosis
Perspectives from people navigating life with Cold agglutinin disease.
Explore research for Cold agglutinin disease
Explore actively recruiting Cold agglutinin disease studies with HealthSpark.
Find actively recruiting studies for Cold agglutinin 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
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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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