Living with Leiomyoma of vulva and esophagus
A rare inherited condition with smooth muscle tumors in the lower esophagus and sometimes the vulva.
Understanding Leiomyoma of vulva and esophagus
It can also cause lesions on the vulva and enlargement of the clitoris from tumor growth at its base. Chromosome and hormone studies in people with this condition have shown nothing abnormal. A leiomyoma of the vulva should lead to x-ray studies of the esophagus, and the reverse.
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet. Its summary mentions tumors in the lower esophagus and lesions of the vulva.
- Tumors in the lower esophagus
- Lesions of the vulva
- Enlarged clitoris from tumor growth
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 name a gene. It is listed as autosomal dominant, which means one changed copy of a gene is enough to cause it.
Also known as: leiomyomatosis, esophagogastric and vulvar
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 Leiomyoma of vulva and esophagus.
Explore research for Leiomyoma of vulva and esophagus
Explore actively recruiting Leiomyoma of vulva and esophagus studies with HealthSpark.
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- Recruiting studies from ClinicalTrials.gov
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- 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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