Living with Autoimmune myocarditis
An autoimmune disease in which the immune system causes inflammation of the heart muscle.
Understanding Autoimmune myocarditis
Some people have no noticeable symptoms. When symptoms are present, they can include chest pain, abnormal heartbeat, shortness of breath, fatigue, and leg swelling. Signs of infection like fever, headache, sore throat, or diarrhea may also occur.
Signs & symptoms
GARD says some people have no symptoms. When present, symptoms may include:
- Chest pain
- Abnormal heartbeat
- Shortness of breath
- Fatigue
- Leg swelling
- Fever, headache, sore throat, or diarrhea
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
Your doctor may refer you to a specialist who knows rare conditions.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Autoimmune Association and Global Autoimmune Institute may keep lists of experts for this condition.
Care & treatment
- Care team
- A doctor familiar with rare conditions, plus specialists as needed
- Expert care
- Expert lists: Autoimmune Association, Global Autoimmune Institute
- 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 Autoimmune 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
GARD says the exact cause is unknown. In autoimmune conditions in general, the immune system mistakenly attacks healthy tissue.
Patient organizations
- Autoimmune AssociationAutoimmune myocarditis · United States
- Global Autoimmune InstituteAutoimmune myocarditis · United States
- Myocarditis FoundationAutoimmune myocarditis · United States
You are more than your diagnosis
Perspectives from people navigating life with Autoimmune myocarditis.
Explore research for Autoimmune myocarditis
Explore actively recruiting Autoimmune myocarditis studies with HealthSpark.
Find actively recruiting studies for Autoimmune myocarditis 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
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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