What are the possible causes of Hemophagocytic Lymphohistiocytosis (HLH)?

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Causes of Hemophagocytic Lymphohistiocytosis (HLH)

HLH is fundamentally divided into primary (genetic) and secondary (acquired) forms, with secondary HLH triggered by infections (particularly EBV and CMV), malignancies (especially T-cell/NK-cell lymphomas and Hodgkin lymphoma), autoimmune/autoinflammatory conditions, or occurring during chemotherapy-induced immunosuppression. 1, 2

Primary (Genetic) HLH

Hereditary defects that predispose to primary HLH include: 1

  • Familial HLH types 2-5 (mutations affecting perforin, UNC13D, STX11, STXBP2)
  • Griscelli syndrome type 2
  • Chediak-Higashi syndrome
  • X-linked lymphoproliferative syndromes types 1 and 2 (XLP1, XLP2) - XLP1 is particularly associated with EBV-triggered HLH and lymphoma development 1
  • Other immunodeficiencies including MAGT1, ITK, and CD27 deficiencies 1

Primary HLH predominantly occurs in childhood but is increasingly recognized in adolescents and adults. 1 These genetic defects impair cytotoxic granule function in NK cells and cytotoxic T lymphocytes, leading to defective killing of target cells and failure to contract the immune response. 3, 4

Secondary (Acquired) HLH

Infectious Triggers

Viral infections are the most frequent triggers of secondary HLH: 1, 2

  • Epstein-Barr virus (EBV) - the most common viral trigger 1
  • Cytomegalovirus (CMV) 1, 5
  • HIV-associated infections 5
  • Invasive fungi and bacterial infections - particularly in chemotherapy-induced immunosuppression 1

Malignancy-Associated HLH

Malignancy-Triggered HLH occurs most frequently with: 1

  • T-cell and NK-cell lymphomas or leukemias - most common malignancy association 1
  • Diffuse large B-cell lymphoma (DLBCL) 1
  • Hodgkin lymphoma 1, 6

Malignancy can trigger HLH through two distinct scenarios: as a presenting feature at disease onset or relapse, or during/after chemotherapeutic treatment while patients are frequently in remission. 1 Malignant cells may secrete cytokines (including interferon-γ and interleukin-6) that contribute to hyperinflammation. 1

HLH During Chemotherapy

Chemotherapy-induced immunosuppression creates vulnerability to infections that trigger HLH, with invasive fungi and bacterial infections playing a substantial role beyond the typical viral triggers. 1 This was first recognized in patients receiving immunosuppressive treatment after kidney transplantation. 1

Autoimmune/Autoinflammatory Conditions

Macrophage activation syndrome (MAS) represents HLH occurring in the context of rheumatic diseases and other autoimmune/autoinflammatory disorders. 2, 7, 8, 3

Important Clinical Considerations

In male patients with lymphoma and EBV-driven HLH, genetic or flow cytometric analysis for XLP1 should be strongly considered, as 24% of XLP1 patients develop malignancy, usually Hodgkin lymphoma. 1

Hypomorphic biallelic perforin mutations confer predisposition to both late-onset HLH and hematologic malignancies, particularly BCR-ABL positive acute lymphoblastic leukemia. 1

Co-triggers are common - viral infections may act as co-triggers in malignancy-associated HLH, and it is often difficult to differentiate between malignancy-triggered HLH and HLH during chemotherapy when both malignancy reactivation and infection coexist. 1

References

Guideline

Guideline Directed Topic Overview

Dr.Oracle Medical Advisory Board & Editors, 2025

Guideline

Hemophagocytic Lymphohistiocytosis Diagnosis and Management

Praxis Medical Insights: Practical Summaries of Clinical Guidelines, 2025

Research

Hemophagocytic lymphohistiocytosis: pathogenesis and treatment.

Hematology. American Society of Hematology. Education Program, 2013

Research

Hemophagocytic lymphohistiocytosis (HLH) and related disorders.

Hematology. American Society of Hematology. Education Program, 2009

Research

Hemophagocytic Lymphohistiocytosis in a Patient With Advanced HIV and Cytomegalovirus Infection.

Journal of investigative medicine high impact case reports, 2020

Guideline

Diagnosis and Management of Hemophagocytic Lymphohistiocytosis (HLH)

Praxis Medical Insights: Practical Summaries of Clinical Guidelines, 2025

Research

Hemophagocytic lymphohistiocytosis: An update on pathogenesis, diagnosis, and therapy.

Best practice & research. Clinical rheumatology, 2020

Professional Medical Disclaimer

This information is intended for healthcare professionals. Any medical decision-making should rely on clinical judgment and independently verified information. The content provided herein does not replace professional discretion and should be considered supplementary to established clinical guidelines. Healthcare providers should verify all information against primary literature and current practice standards before application in patient care. Dr.Oracle assumes no liability for clinical decisions based on this content.

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