Living with Catastrophic antiphospholipid syndrome
A rare autoimmune condition in which blood clots form in several organs at once or within a week.
Understanding Catastrophic antiphospholipid syndrome
It occurs along with antiphospholipid antibodies in the blood. Doctors also confirm that small blood vessels are blocked in at least one affected organ. It is often triggered by infection, trauma, or surgery. It usually affects adults.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Abnormal blood clots
- Blood clots in deep veins
- Blood clots in arteries
- Anemia from broken-down red blood cells (hemolytic anemia)
- Joint pain (arthralgia)
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 autoimmune and inflammatory disease specialists and 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
APS Foundation of America, Inc. and Autoimmune Association may keep lists of experts for this condition.
Care & treatment
- Care team
- autoimmune and inflammatory disease specialists (rheumatologists); Blood and bone marrow specialists (hematologists)
- Expert care
- Expert lists: APS Foundation of America, Inc., Autoimmune Association
- 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 APS Foundation of America, Inc. 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 condition is autoimmune and happens with antiphospholipid antibodies in the blood. It is often triggered by infection, trauma, or surgery.
Also known as: asherson's syndrome; caps; catastrophic aps
Patient organizations
- APS Foundation of America, Inc.Catastrophic antiphospholipid syndrome · United States
- Autoimmune AssociationCatastrophic antiphospholipid syndrome · United States
- Lupus Foundation of AmericaCatastrophic antiphospholipid syndrome · United States
- National Blood Clot AllianceCatastrophic antiphospholipid syndrome · United States
You are more than your diagnosis
Perspectives from people navigating life with Catastrophic antiphospholipid syndrome.
Explore research for Catastrophic antiphospholipid syndrome
Explore actively recruiting Catastrophic antiphospholipid syndrome studies with HealthSpark.
Find actively recruiting studies for Catastrophic antiphospholipid syndrome 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
Powered by HealthSpark, our AI chat helper
I can help you find recruiting Catastrophic antiphospholipid syndrome studies. Enter a ZIP code, address or city below and I'll look within 50 miles.
Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
Get Signals for Catastrophic antiphospholipid syndrome
Stay in the loop with community stories and updates from medical researchers.
Create a living journal that talks back
HealthStory evolves private journaling with a living AI journal that talks back and asks thoughtful questions, helping you capture your Catastrophic antiphospholipid syndrome experiences more deeply and prepare for better conversations with your doctors and care team.
Your journal is private. Sharing your story publicly is a separate choice, made with Share your story above.