Living with Thrombotic thrombocytopenic purpura
A rare condition in which clots form in small blood vessels and use up platelets, which can affect the brain and kidneys.
Understanding Thrombotic thrombocytopenic purpura
The clots can block blood flow to organs such as the brain, kidneys, and heart. Platelets get used up, so levels drop, and red blood cells break apart (hemolytic anemia). There is an acquired form, which usually appears in late childhood or adulthood, and a familial (inherited) form. It can appear at any time in life.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Low platelet count (thrombocytopenia)
- Headache and confusion
- Seizures or stroke
- Belly pain or diarrhea
- Hemolytic anemia: tiredness and paleness
- Trouble breathing
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 National Kidney Foundation 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 the inherited form is autosomal recessive, so a child inherits a changed copy of a gene from each parent. The acquired form is not inherited. The record doesn't name a gene.
Also known as: moschcowitz disease; moschcowitz syndrome; moschcowitz's syndrome; moschkowitz disease; moschowitz disease; moschowitz syndrome
Patient organizations
- National Kidney FoundationKidney diseases · United States
- Renal Support NetworkKidney diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Thrombotic thrombocytopenic purpura.
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- Recruiting studies from ClinicalTrials.gov
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