Living with Ewing sarcoma of bone
A bone tumor, often in the long bones, that causes pain and a mass in the area.
Understanding Ewing sarcoma of bone
It is one end of a range of tumors called Ewing sarcoma/peripheral neuroectodermal tumor. It often affects the long bones. Findings include pain and a mass where the tumor is. X-rays show areas where bone has broken down. Fever and anemia are often seen.
Signs & symptoms
GARD doesn't list specific symptoms for this condition. Its summary describes:
- Pain in the affected bone
- A mass in the area
- Fever
- Anemia
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.
Care & treatment
- Care team
- A doctor familiar with rare conditions, plus specialists as needed
- 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 rare disease patient organizations for support
- 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: bone ewing sarcoma; bone ewing's sarcoma; bone localised ewing sarcoma; bone localised ewing's sarcoma; bone localized ewing sarcoma; bone localized ewing's sarcoma
Patient organizations
Rare-disease groups that can help
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Ewing sarcoma of bone.
Explore research for Ewing sarcoma of bone
Explore actively recruiting Ewing sarcoma of bone studies with HealthSpark.
Find actively recruiting studies for Ewing sarcoma of bone 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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