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CYLD cutaneous syndrome
Reviewed by Medicinsk Expert•Last updated: 2026-10-22•Condition

CYLD cutaneous syndrome

CYLD cutaneous syndrome is a genetic condition characterized by the growth of multiple benign skin tumors and an increased risk of developing other types of tumors.

Overview

CYLD cutaneous syndrome involves the growth of multiple noncancerous (benign) skin tumors that develop from skin appendages. Common tumor types include:

  • Cylindromas: Often appear on the scalp; believed to begin in hair follicles.
  • Spiradenomas: Often found in conjunction with cylindromas.
  • Trichoepitheliomas: Typically develop on the skin around the nose and upper lip.

While usually benign, these tumors can occasionally become cancerous (malignant), grow rapidly, and form ulcers. Tumors may also develop in other structures, such as the salivary glands.

Clinical Progression

Tumors typically begin to develop in late childhood or the teens. They tend to increase in size and number over time. Large tumors can become infected or cause sensory issues if they occur near the eyes, ears, nose, or mouth. In rare cases, cylindromas in the lungs can cause breathing difficulties.

Causes

The condition is caused by mutations in the CYLD gene, which produces an enzyme that acts as a tumor suppressor. This enzyme regulates signaling pathways involved in cell growth and division. Individuals with the syndrome are born with one mutated copy of the gene. For tumors to develop, a second, somatic mutation must occur in a cell during the person's lifetime, resulting in the total loss of functional CYLD enzyme in that cell.

Inheritance

Susceptibility to the syndrome is inherited in an autosomal dominant pattern. Most individuals inherit the initial germline mutation from a parent. In rare cases, the mutation is not inherited but occurs as a somatic mutation early in development, resulting in mosaicism, where only some of the body's cells carry the mutation.

Frequently Asked Questions

While most cylindromas, spiradenomas, and trichoepitheliomas remain benign, malignant transformation can happen. Warning signs include a previously stable nodule growing rapidly, developing surface ulceration or crusting, spontaneous bleeding, unexplained pain, or becoming firmly tethered to underlying tissues. Any rapidly changing lesion requires prompt biopsy to rule out malignant cylindroma or spiradenocarcinoma.
Management is tailored to tumor size, location, and symptoms. Small lesions can be treated with electrosurgery, dermabrasion, or carbon dioxide laser ablation to minimize scarring, especially on the face. Larger or painful tumors, particularly confluent scalp cylindromas known as turban tumors, generally require precise surgical excision. Complete prevention of recurrence is difficult because remaining skin cells still carry the genetic susceptibility, so periodic dermatologic monitoring is necessary.
Yes. Because CYLD cutaneous syndrome is an autosomal dominant condition, first-degree relatives have a 50 percent chance of carrying the altered CYLD gene. Genetic counseling and targeted DNA testing can identify at-risk relatives before extensive tumors appear, enabling early skin examinations, regular scalp checks, and timely monitoring for rare extracutaneous lesions, such as salivary gland tumors.
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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