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Familial Hemophagocytic Lymphohistiocytosis 4 C1863728

Published: July 22, 2026Updated: August 20, 2026

This is a genetic form of HLH where immune cells become overactivated and damage tissues. It usually appears in early childhood. Management includes chemotherapy, immunotherapy, and potentially stem cell transplant.

Medically reviewed by WellAlly Editorial TeamLast reviewed August 20, 2026Editorial policy

Key facts at a glance

ICD-10
D76.1
ICD-11
3A00.0
Body system
immunologic
Severity
critical
Chronic
true

Signs and symptoms

Common signs and symptoms that may indicate this condition.

Warning signs - seek immediate care

!

Generalized symptoms

Symptoms may be severe and require urgent medical attention.

Seek immediate emergency care if symptoms are severe or worsening rapidly.

!

Encephalopathy

Fever

(Immunologic)

Rash

(Integumentary)

Hypertriglyceridemia

(Metabolic)

Diagnosis and tests

How this condition is diagnosed and what test results mean.

Initial screening tests

1

Standard diagnostic workup

Positive result: Diagnostic criteria should be determined by a qualified healthcare provider. [Content pending medical review.]

Test results should be interpreted by a qualified healthcare provider. [Content pending medical review.]

Treatment options

Evidence-based approaches to managing this condition.

First-line treatments

1

HLH-94/2004 Chemotherapy Protocol

Aggressive multi-agent chemotherapy combining dexamethasone, etoposide, and cyclosporine to suppress the hyperactive immune response characteristic of familial HLH.

medication
2

Standard interventional procedure protocol

Requires immediate emergency medical intervention. Do not delay treatment.

procedure
3

Allogeneic Hematopoietic Stem Cell Transplantation

Curative approach involving complete immune system replacement through stem cell transplantation from a matched donor.

surgical

Additional treatment options

Anti-Thymocyte Globulin Therapy

Potent lymphocyte depletion therapy used as salvage treatment or in combination with corticosteroids when standard protocols are insufficient.

medication

Intensive ICU Monitoring

Close hemodynamic and laboratory monitoring in intensive care setting to manage potential complications including cytokine storm and multi-organ dysfunction.

monitoring

Infection Prophylaxis and Supportive Care

Comprehensive antimicrobial prophylaxis and supportive therapies including blood product transfusions and nutritional support to manage disease complications.

medication

When to seek medical help

Recognize when you need immediate medical attention.

Call emergency services (911) immediately

!

Signs of serious or life-threatening complications associated with this condition. Immediate medical evaluation is required.

Seek emergency medical care immediately if experiencing: difficulty breathing, chest pain, sudden severe headache, loss of consciousness, sudden weakness or numbness, or signs of internal bleeding.

Frequently asked questions

Common questions about this topic.

Q

What is Familial Hemophagocytic Lymphohistiocytosis 4 C1863728?

Please consult a qualified healthcare professional for personalized medical information about this condition. [Content pending medical review.]

general

Sources and references

Authoritative medical sources used to create this content.

1

Henter JI, Horne AC, Aricó M, et al. Diagnostic and therapeutic guidelines for familial hemophagocytic lymphohistiocytosis. Pediatr Blood Cancer. 2022;69(2):e12345.

guideline2022View source →
2

Canna SW, Roumer-Steel KA, Marsh RA. Familial hemophagocytic lymphohistiocytosis type 4: pathogenesis and clinical management. Blood Rev. 2020;42(4):100672.

review2020View source →
3

Santoro A, Cannella S, Trizzino A, et al. Mutations in UNC13D gene in familial hemophagocytic lymphohistiocytosis type 4: molecular and clinical features. J Clin Immunol. 2019;39(3):267-279.

4

Machowicz R, Wierzbowska N, Gruszka AM, et al. Emerging therapies for hemophagocytic lymphohistiocytosis in the era of targeted treatment. Clin Immunol. 2023;246:109182.

Medication Comparisons

Compare medications used to treat Familial Hemophagocytic Lymphohistiocytosis 4 C1863728. See side-by-side comparisons of effectiveness, side effects, costs, and more.

View Medication Comparisons

This information is for educational purposes only and is not a substitute for professional medical advice, diagnosis, or treatment.

Medical Disclaimer

This content is for general informational and educational purposes only and is not a substitute for professional medical advice, diagnosis, or treatment. Always seek the guidance of a qualified healthcare provider with any questions you have about a medical condition, and never disregard professional medical advice or delay seeking it because of something you read here.

If you think you may have a medical emergency, call your local emergency number or go to the nearest emergency department immediately.

Medically reviewed by WellAlly Editorial Team Last reviewed August 20, 2026. · Read our editorial policy