Living with Familial hemophagocytic lymphohistiocytosis type 1
A rare inherited immune condition with overactive immune cells, starting within months or years after birth.
Understanding Familial hemophagocytic lymphohistiocytosis type 1
It usually starts within a few months after birth, and less often several years after birth.
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet.
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Your doctor may refer you to a specialist who knows rare conditions.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Immune Deficiency Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- A doctor familiar with rare conditions, plus specialists as needed
- Expert care
- Expert lists: Immune Deficiency Foundation
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Immune Deficiency Foundation
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
GARD doesn't describe a cause for this condition yet.
Also known as: erythrophagocytic lymphohistiocytosis, familial; fhl1; hemophagocytic reticulosis, familial; hlh1; hplh1; reticulosis, familial histiocytic
Patient organizations
- Immune Deficiency FoundationFamilial hemophagocytic lymphohistiocytosis type 1 · United States
You are more than your diagnosis
Perspectives from people navigating life with Familial hemophagocytic lymphohistiocytosis type 1.
Explore research for Familial hemophagocytic lymphohistiocytosis type 1
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- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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