Living with Multiple endocrine neoplasia
A group of inherited conditions with tumors in two or more hormone-producing glands.
Understanding Multiple endocrine neoplasia
It typically involves tumors in at least two endocrine glands, and tumors can also form in other organs. They can be noncancerous or cancerous. The major forms are types 1, 2, and 4, which differ by the genes involved, hormones made, and signs. Type 1 often involves the parathyroid, pituitary, and pancreas. Type 2 most often involves medullary thyroid cancer and sometimes an adrenal tumor called pheochromocytoma. It can begin at any time in life.
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet.
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 cancer specialists, genetic specialists and hormone specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- Cancer specialists (oncologists); Genetic specialists (geneticists); Hormone specialists (endocrinologists)
- 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
Changes in genes (also called variants) cause this condition, and the genes differ by type. It is autosomal dominant, which means a changed copy of the gene from one parent can be enough to cause it.
Also known as: endocrine adenomatosis; familial polyendocrine adenomatosis; mea - multiple endocrine adenomatosis; men; men - multiple endocrine neoplasia; men syndrome
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 Multiple endocrine neoplasia.
Explore research for Multiple endocrine neoplasia
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- Eligibility is confirmed by the study team
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