Living with Essential thrombocythemia
A blood condition with too many platelets, which can cause blood clots and sometimes bleeding.
Understanding Essential thrombocythemia
Some people have no symptoms. Others have problems from the extra platelets, most often abnormal blood clots (thrombosis). Clots can lead to strokes, leg pain or swelling, or clots in the lungs. Bleeding, such as nosebleeds, bleeding gums, or gut bleeding, can occur when platelet counts are very high. It can appear at any time in life.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- High platelet count
- Blood clots in arteries or veins
- Headache
- Enlarged spleen
- Bleeding or bruising easily
- Burning or tingling feeling in the skin
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 cancer specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Aplastic Anemia and MDS International Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Blood and bone marrow specialists (hematologists); Cancer specialists (oncologists)
- Expert care
- Expert lists: Aplastic Anemia and MDS International Foundation
- 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 Aplastic Anemia and MDS International 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 doesn't describe a cause for this condition yet.
Also known as: essential hemorrhagic thrombocythemia; essential thrombocytemia; essential thrombocythaemia; essential thrombocythemia (clinical disorder); essential thrombocytosis; et
Patient organizations
- Aplastic Anemia and MDS International FoundationEssential thrombocythemia · United States
- Friends of ET ResearchEssential thrombocythemia · United States
- MPN Research FoundationEssential thrombocythemia · United States
- Blood Cancer UnitedBlood or bone marrow disease · United States
- HealthTree FoundationBlood or bone marrow disease · United States
You are more than your diagnosis
Perspectives from people navigating life with Essential thrombocythemia.
Explore research for Essential thrombocythemia
Explore actively recruiting Essential thrombocythemia studies with HealthSpark.
Find actively recruiting studies for Essential thrombocythemia 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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