Living with Paroxysmal cold hemoglobinuria
A very rare type of anemia in which cold exposure triggers the immune system to destroy red blood cells.
Understanding Paroxysmal cold hemoglobinuria
Antibodies that react in the cold attack red blood cells. This causes a sudden appearance of hemoglobin (the red blood cell protein) in the urine, typically after exposure to cold. GARD lists the onset as childhood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Dark or red-colored urine
- Hemolytic anemia (red cells break down)
- Back pain
- Fever
- Headache
- Joint pain
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.
Care & treatment
- Care team
- Blood and bone marrow specialists (hematologists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- 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 rare disease patient organizations for support
- 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 cold-reacting autoantibodies in the blood cause this condition. Autoantibodies are antibodies that attack the body's own cells.
Also known as: cold agglutinin hemoglobinuria; cold donath landsteiner type autoimmune hemolytic anemia; cold hemoglobinuria; donath-landsteiner hemolytic anaemia; donath-landsteiner hemolytic anemia; donath-landsteiner syndrome
Patient organizations
Rare-disease groups that can help
- 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 Paroxysmal cold hemoglobinuria.
Explore research for Paroxysmal cold hemoglobinuria
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