Living with Acquired thrombotic thrombocytopenic purpura
A blood disorder in which small clots form in blood vessels and platelets run low, causing bruising and organ problems.
Understanding Acquired thrombotic thrombocytopenic purpura
Small clots form in blood vessels around the body, and they can reduce blood flow to the brain, kidneys, and heart. Problems may include headaches, confusion, slurred speech, fever, belly pain, and heart or kidney problems. Anemia can cause paleness, yellow skin, and tiredness. An episode usually starts suddenly and lasts days to weeks. Relapses can occur in up to 60 percent of people. GARD lists onset as any time in life.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Low platelet count (thrombocytopenia)
- Confusion and headache
- Fever
- Fatigue and weakness
- Abdominal pain
- Blood in the urine
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 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); 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 Platelet Disorder Support 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 body mistakenly makes antibodies that block the activity of the ADAMTS13 enzyme, which normally helps control blood clotting factors.
Also known as: acquired adamts13 deficiency; acquired thrombotic thrombocytopenic purpura (ttp); acquired ttp; attp; autoimmune thrombotic thrombocytopenic purpura; idiopathic thrombotic thrombocytopenic purpura
Patient organizations
- Platelet Disorder Support AssociationAcquired thrombotic thrombocytopenic purpura · United States
- United States Thrombotic Microangiopathy Alliance (USTMA)Acquired thrombotic thrombocytopenic purpura · 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 Acquired thrombotic thrombocytopenic purpura.
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