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Living with Gigantism

Extra-large growth in childhood from too much growth hormone, usually caused by a noncancerous pituitary tumor.

Understanding Gigantism

Gigantism (pituitary gigantism) is abnormally large growth caused by too much growth hormone during childhood.

It occurs before the growth plates in the bones close. It leads to excess growth in height, muscles, and organs, so a child is extremely large for their age. It may begin at any age before the growth plates close.

Signs & symptoms

Symptoms vary from person to person. GARD lists these among the most common:

  • Very tall for age
  • Large hands and feet with thick fingers and toes
  • Prominent forehead and jaw, and thick facial features
  • Headache
  • Increased sweating
  • Delayed puberty or irregular periods

Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.

Diagnosis

  1. Talk with your doctor

    Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.

  2. See a specialist

    Specialists who may be involved include cancer specialists, genetic specialists and hormone specialists.

  3. Ask which tests can help

    Your care team will decide which exams and tests can confirm the diagnosis.

  4. Connect with expert centers

    Pituitary Network Association may keep lists of experts for this condition.

Care & treatment

Care team
Cancer specialists (oncologists); Genetic specialists (geneticists); Hormone specialists (endocrinologists)
Expert care
Expert lists: Pituitary Network Association
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 Pituitary Network Association
  • 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
Bring these questions to your next doctor visit
Is a pituitary tumor causing my or my child's growth?
Could an underlying condition or the GPR101 gene be involved?
Which specialists, such as an endocrinologist, should be on our team?

Quick facts

Symptoms usually starta variety of ages
InheritanceAutosomal Dominant, X-Linked

The most common cause is a noncancerous pituitary tumor that makes too much growth hormone. Other conditions can be involved, such as Carney complex, McCune-Albright syndrome, MEN-1 and MEN-4, and neurofibromatosis. In some people it is caused by changes in the GPR101 gene.

GeneticEndocrine

Also known as: genetic giant; giant; giantism; hypophyseal gigantism; infantile and juvenile forms of acromegaly; normal giant

Patient organizations

Broader rare-disease groups

Source: NIH GARD · GigantismGARD ID 6506 · GARD page updated September 2026 · Plain-language summary by Know Rare; editorial review pending. General information, not medical advice.

You are more than your diagnosis

Perspectives from people navigating life with Gigantism.

Explore the Gigantism blog

Explore research for Gigantism

Explore actively recruiting Gigantism studies with HealthSpark.

HealthSpark

Find actively recruiting studies for Gigantism 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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