Overview
Familial isolated pituitary adenoma (FIPA) is a rare inherited condition in which two or more members of the same family develop benign (non-cancerous) tumors of the pituitary gland, a small hormone-producing gland located at the base of the brain. Unlike other inherited conditions that also cause pituitary tumors (such as Multiple Endocrine Neoplasia), FIPA only involves pituitary adenomas without tumors in other organs. These tumors can produce excess hormones, leading to a variety of symptoms depending on which hormone is overproduced. The most common types are growth hormone-secreting tumors (causing acromegaly or gigantism) and prolactin-secreting tumors (prolactinomas), though non-functioning adenomas and other hormone-producing types also occur. Symptoms vary widely depending on the tumor type and size. Growth hormone excess can cause enlarged hands, feet, and facial features in adults (acromegaly) or excessive height in children (gigantism). Prolactinomas may cause irregular periods, breast milk production in non-pregnant women, or reduced sex drive in men. Large tumors can press on nearby structures, causing headaches and vision problems, particularly loss of peripheral (side) vision. Treatment depends on the tumor type and may include medications to shrink the tumor or control hormone levels, surgery to remove the tumor (usually through the nose), and sometimes radiation therapy. Early detection through family screening is important because tumors found in FIPA families tend to be larger and appear at younger ages than sporadic pituitary adenomas. With appropriate treatment, most patients can achieve good hormone control and quality of life.
Also known as:
Key symptoms:
HeadachesLoss of side (peripheral) visionEnlarged hands and feetChanges in facial features (coarsened or enlarged jaw, brow)Excessive growth or tall stature in childrenIrregular or absent menstrual periodsUnexpected breast milk productionReduced sex drive or erectile dysfunctionFatigue and low energyWeight gainJoint painExcessive sweatingSleep apneaInfertilityDouble vision or other eye problems
Autosomal dominant
Passed on from just one parent; each child has about a 50% chance of inheriting it
Variable
Can begin at different ages, from infancy through adulthood
Treatments
No FDA-approved treatments are currently listed for Familial isolated pituitary adenoma.
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Rare Disease Specialist
Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to Familial isolated pituitary adenoma.
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Caregiver Resources
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Questions for your doctor
Bring these to your next appointment
- Q1.What type of pituitary adenoma do I have, and which hormones are affected?,Should my family members be tested for the genetic mutation or screened with blood tests and MRI?,What is the best treatment option for my specific tumor — medication, surgery, or both?,How often will I need blood tests and MRI scans for monitoring?,Will I need to take hormone replacement medications, and if so, for how long?,What are the signs of a medical emergency related to my condition that I should watch for?,Are there clinical trials or new treatments available for pituitary adenomas that might benefit me?
Common questions about Familial isolated pituitary adenoma
What is Familial isolated pituitary adenoma?
Familial isolated pituitary adenoma (FIPA) is a rare inherited condition in which two or more members of the same family develop benign (non-cancerous) tumors of the pituitary gland, a small hormone-producing gland located at the base of the brain. Unlike other inherited conditions that also cause pituitary tumors (such as Multiple Endocrine Neoplasia), FIPA only involves pituitary adenomas without tumors in other organs. These tumors can produce excess hormones, leading to a variety of symptoms depending on which hormone is overproduced. The most common types are growth hormone-secreting tumo
How is Familial isolated pituitary adenoma inherited?
Familial isolated pituitary adenoma follows a autosomal dominant inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
Which specialists treat Familial isolated pituitary adenoma?
2 specialists and care centers treating Familial isolated pituitary adenoma are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.