Hemophagocytic Lymphohistiocytosis (HLH)

Common Name(s)

Hemophagocytic Lymphohistiocytosis (HLH), Hemophagocytic lymphohistiocytosis

Hemophagocytic lymphohistiocytosis (HLH) is a condition in which the body makes too many activated immune cells (macrophages and lymphocytes). People with HLH usually develop symptoms within the first months or years of life which may include fever, enlarged liver or spleen, cytopenia (lower-than-normal number of blood cells), and neurological abnormalities. HLH may be inherited in an autosomal recessive manner or it can have non-genetic causes in which case it is called acquired HLH. There are five subtypes of inherited HLH which are designated familial HLH, types 1-5. Each subtype is caused by a change (mutation) in a different gene. The genetic cause of type 1 is currently unknown. Types 2-5 are caused by mutations in the PRF1 gene, the UNC13D gene, the STX11 gene and the STXBP2 gene, respectively. Treatment depends on a number of factors, including the severity of symptoms, the age of onset, and the underlying cause of the condition.
 

Advocacy and Support Organizations

 

Condition Specific Organizations

Following organizations serve the condition "Hemophagocytic Lymphohistiocytosis (HLH)" for support, advocacy or research.

Autoinflammatory Alliance

The Autoinflammatory Alliance is a 501 (c)(3) non-profit public charity dedicated to promoting awareness, proper diagnosis and treatment, and improved care for people with autoinflammatory diseases. We started in 2006 under the name, The NOMID Alliance with the same basic goal: to help patients with CAPS and other autoinflammatory diseases. We have a IRS approval as tax-exempt under both names.

Last Updated: 7 May 2015

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Histiocytosis Association

The Histiocytosis Association is dedicated to raising awareness about histiocytic disorders, providing educational and emotional support, and funding research leading to better treatments and a cure.

Last Updated: 30 Oct 2012

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General Support Organizations

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How do you compare to others with this condition?

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Advocacy and Support Organizations

 

Condition Specific Organizations

Following organizations serve the condition "Hemophagocytic Lymphohistiocytosis (HLH)" for support, advocacy or research.

Autoinflammatory Alliance

The Autoinflammatory Alliance is a 501 (c)(3) non-profit public charity dedicated to promoting awareness, proper diagnosis and treatment, and improved care for people with autoinflammatory diseases. We started in 2006 under the name, The NOMID Alliance with the same basic goal: to help patients with CAPS and other autoinflammatory diseases. We have a IRS approval as tax-exempt under both names.

http://www.autoinflammatory.org

Last Updated: 7 May 2015

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Histiocytosis Association

The Histiocytosis Association is dedicated to raising awareness about histiocytic disorders, providing educational and emotional support, and funding research leading to better treatments and a cure.

http://www.histio.org

Last Updated: 30 Oct 2012

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General Support Organizations

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General Resources

Healthier Ever After (injection tips book & program)

This child-friendly book is for patients and their families to learn how to manage their injectable medications, and has a program to help children to discuss and make a plan of care, and goals with rewards to chart on a reusable white board page.

Updated 6 May 2015

Open Doc
 
 
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Scientific Literature

Articles from the PubMed Database

Research articles describe the outcome of a single study. They are the published results of original research.
The terms "Hemophagocytic Lymphohistiocytosis (HLH)" returned 0 free, full-text research articles on human participants.

Reviews from the PubMed Database

Review articles summarize what is currently known about a disease. They discuss research previously published by others.
The terms "Hemophagocytic Lymphohistiocytosis (HLH)" returned 0 free, full-text review articles on human participants.

 
 
 
 
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Clinical Trial Information This information is provided by ClinicalTrials.gov

Tocilizumab and Hemophagocytic Lymphohistiocytosis (HLH)
 

Status: Recruiting

Condition Summary: Hemophagocytic Lymphohistiocytosis

 

Last Updated: 23 Apr 2015

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Hybrid Immunotherapy for Hemophagocytic LymphoHistiocytosis
 

Status: Recruiting

Condition Summary: Hemophagocytic Lymphohistiocytosis

 

Last Updated: 31 Oct 2012

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T Cell Depletion for Recipients of HLA Haploidentical Related Donor Stem Cell Grafts
 

Status: Recruiting

Condition Summary: Acute Lymphoblastic Leukemia; Non Hodgkins Lymphoma; Myelodysplastic Syndrome; Acute Myeloid Leukemia; Chronic Myelogenous Leukemia; Hemophagocytic Lymphohistiocytosis (HLH); Familial Hemophagocytic Lymphohistiocytosis (FLH); Viral-associated Hemophagocytic Syndrome (VAHS); X-linked Lymphoproliferative Disease (XLP)

 

Last Updated: 18 May 2015

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