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Living with Intrauterine growth restriction-short stature-early adult-onset diabetes syndrome

A rare genetic condition affecting growth before birth and in adulthood, with insulin resistance and diabetes starting in early adulthood.

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Understanding Intrauterine growth restriction-short stature-early adult-onset diabetes syndrome

Intrauterine growth restriction-short stature-early adult-onset diabetes syndrome is a rare genetic condition of growth and blood sugar control.

This endocrine (hormone) condition involves slow growth before birth. Teens do not have a typical growth spurt, and adults have a short but well-proportioned body. People have insulin resistance and develop diabetes in early adulthood. Testicular size is low, but fertility is normal. GARD notes no sign of adrenal gland failure.

Signs & symptoms

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

  • Slow growth before birth (intrauterine growth restriction)
  • Short stature
  • Smaller than usual testicles
  • No growth spurt in the teen years
  • Insulin resistance
  • Diabetes starting in early adulthood

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 genetic specialists and hormone specialists.

  3. Consider genetic testing

    Changes in CDKN1C are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.

Care & treatment

Care team
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
Bring these questions to your next doctor visit
Can genetic testing for the CDKN1C gene confirm the diagnosis?
How often should blood sugar and insulin resistance be checked?
Which specialists should be part of our care team, such as an endocrinologist?

Quick facts

Symptoms usually startduring Pregnancy and as a Newborn
InheritanceAutosomal Dominant
GenesCDKN1C

Changes in the CDKN1C gene cause this condition. It is passed down in an autosomal dominant way, meaning one changed copy of the gene is enough to cause it.

GeneticEndocrine

Also known as: intrauterine growth restriction, short stature, early adult-onset diabetes syndrome

Patient organizations

Rare-disease groups that can help

Source: NIH GARD · Intrauterine growth restriction-short stature-early adult-onset diabetes syndromeGARD ID 21818 · 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 Intrauterine growth restriction-short stature-early adult-onset diabetes syndrome.

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