Living with Duplication of the pituitary gland
A rare brain condition present at birth in which the pituitary gland or its stalk is doubled, often with facial differences and hormone problems.
Understanding Duplication of the pituitary gland
The pituitary is a small gland that makes hormones. People with this condition may have facial differences and hormone problems, such as early puberty, low sex hormones, underactive thyroid, or high prolactin. Other differences can include cleft lip or palate, a split tongue or uvula, differences in the brain's corpus callosum, and spine defects. Signs show up in the newborn and infant years.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Doubled pituitary gland or stalk
- Cleft palate
- Small head size (microcephaly)
- Missing corpus callosum (part of the brain)
- Severe intellectual disability
- Delays in overall development
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 brain and nervous system 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
- Brain and nervous system specialists (neurologists); 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
GARD says changes in a person's genes cause this condition. It doesn't list a specific gene.
Also known as: dpg-plus syndrome; duplication of pituitary gland; duplication of pituitary gland plus syndrome; duplication of the pituitary gland-plus syndrome; hypophyseal duplication
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 Duplication of the pituitary gland.
Explore research for Duplication of the pituitary gland
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