Living with Atypical hemolytic-uremic syndrome
A condition that mainly affects the kidneys by forming abnormal blood clots in tiny blood vessels, and can occur at any age.
Understanding Atypical hemolytic-uremic syndrome
It has three main features: red blood cells breaking down early (hemolytic anemia), a low platelet count (thrombocytopenia), and kidney failure. Anemia can cause pale skin, fatigue, and shortness of breath. Low platelets can cause easy bruising and bleeding. It is different from the more common typical hemolytic-uremic syndrome.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Sudden kidney injury
- Blood in the urine
- Low platelet count (thrombocytopenia)
- Anemia from broken-down red blood cells
- Paleness and tiredness
- Abnormal complement system tests
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, genetic specialists and kidney 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); Genetic specialists (geneticists); Kidney specialists (nephrologists)
- 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 American Association of Kidney Patients 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
GARD says changes in genes (also called variants) cause this condition, and it can be inherited in a dominant or recessive way. The complement system (part of the immune system) is involved.
Also known as: ahus; ahus - atypical hemolytic uremic syndrome; atypical hemolytic uremic syndrome; atypical hus; d-hus; hemolytic-uremic syndrome without diarrhea
Patient organizations
- American Association of Kidney PatientsAtypical hemolytic-uremic syndrome · United States
- United States Thrombotic Microangiopathy Alliance (USTMA)Atypical hemolytic-uremic syndrome · United States
- National Kidney FoundationKidney diseases · United States
- Renal Support NetworkKidney diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Atypical hemolytic-uremic syndrome.
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