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Chediak-Higashi syndrome
Reviewed by Medicinsk Expert•Last updated: 2026-10-22•Condition

Chediak-Higashi syndrome

Chediak-Higashi syndrome is a rare, inherited disorder that impairs the immune system and causes oculocutaneous albinism, leading to severe, recurrent infections and vision problems.

Overview

Chediak-Higashi syndrome damages immune system cells, making them less effective at fighting viruses and bacteria. Most affected individuals experience serious, life-threatening infections starting in infancy. The condition also affects pigmentation and, in later stages, the nervous system.

Symptoms

  • Immune System: Repeated, persistent, and severe infections.
  • Oculocutaneous Albinism: Abnormally light skin, hair, and eyes. Hair often has a metallic sheen.
  • Vision Problems: Reduced sharpness, rapid involuntary eye movements (nystagmus), and sensitivity to light (photophobia).
  • Bleeding Issues: Problems with coagulation leading to easy bruising and abnormal bleeding.
  • Neurological Issues: In adulthood, patients may experience weakness, clumsiness, difficulty walking, seizures, tremors, and peripheral neuropathy.

The Accelerated Phase

If untreated, most children enter an "accelerated phase," often triggered by a viral infection. During this phase, white blood cells divide uncontrollably and invade organs, leading to fever, organ failure, and severe bleeding, which are typically life-threatening.

Causes

The syndrome is caused by mutations in the LYST gene, which provides instructions for the lysosomal trafficking regulator protein. This protein is essential for the transport of materials into lysosomes—the cell's "recycling centers."

  • Mutations cause lysosomes to become abnormally large, interfering with cell function.
  • In immune cells, these giant lysosomes prevent the cells from responding to bacteria.
  • In pigment cells (melanocytes), melanin is trapped within giant melanosomes, preventing normal pigmentation.

Inheritance

This condition is inherited in an autosomal recessive pattern, meaning both copies of the LYST gene in each cell must have mutations. Parents of an affected individual each carry one copy of the mutated gene but typically do not show symptoms.

Frequently Asked Questions

Seek emergency medical care right away. Provide a detailed history of recent illnesses, medications, and any recent vaccinations. Blood cultures and imaging may be ordered to identify the source, and broad‑spectrum antibiotics are often started empirically. Early treatment is critical to prevent progression to the accelerated phase.
Sudden high fever, chills, rapid breathing, confusion, abdominal pain, or bleeding that does not stop are red flags. If any of these appear, go to the emergency department immediately, as the accelerated phase can lead to organ failure and death within days.
Use prescription sunglasses to reduce glare, wear protective eyewear during sports, and keep the eyes lubricated with artificial tears if dryness occurs. Regular ophthalmology visits help monitor for nystagmus, photophobia, and potential retinal changes.
Platelet transfusions and antifibrinolytic agents can help control bleeding. For immune support, hematopoietic stem‑cell transplantation is the only curative option currently available, but it carries significant risks and requires careful evaluation by a specialized center.===
Source: MedlinePlus, National Library of Medicine

MedlinePlus brings together authoritative health information from the National Library of Medicine (NLM), the National Institutes of Health (NIH), and other government agencies and health-related organizations.

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