Hemophagocytic lymphohistiocytosis (also called hemophagocytic syndrome or “HLH disease”) is a blood and immune system disorder that mainly affects infants and young children who are born with it. However, it can happen to children at any age due to illnesses like cancer or viral infections. Because it is rare and possibly life-threatening, early diagnosis and care is critical.
Experience Means Timely Care for HLH Disease
Our hematologists (blood disorder specialists) in the Nemours Center for Cancer and Blood Disorders work together to identify HLH disease as quickly as possible. We also include specialists in immune disorders to help us plan the most effective treatment for your child.
Since autoimmune care in children is much different than in adults, you can rely on our pediatric experience to help us identify the cause of your child’s symptoms, and to help you through every step of your child’s medical journey.
Services We Offer for HLH Disease
We treat both types of HLH disease. The primary type is congenital (present at birth) and the secondary type can happen because of a virus, infection, or from cancer treatment. We offer a variety of diagnostic and treatment services, which may vary depending on the condition or location, including:
- blood and bone marrow transplants (also called “stem cell transplants”) from a donor or using your child’s own cells
- bone marrow aspiration and biopsy for diagnosis, donor matching, and other tests
- chemotherapy (cancer medicines) may be used to treat HLH disease
- genetic counseling to help with diagnosis and family planning since some HLH syndromes are inherited (passed from parent to child)
- immunology care includes autoimmune disorder specialists
- immunosuppressive therapy to keep the immune system from attacking healthy cells
- immunotherapy boosts your child’s immune system
- neurology care includes specialists in the brain and spinal cord
- palliative care helps with symptoms and offers support for your child and family
- pain management to ease symptoms
- physical medicine and rehabilitation offers physical, occupational and speech therapy
- psychology and psychiatry support services for your child and family
- rheumatology because some HLH happens because of juvenile idiopathic arthritis
- steroid therapy to help fight inflammation
- targeted drug therapy delivers medicines only where needed
Why Choose Us for HLH Disease Care
Our hematology (blood disorder) specialists in the Nemours Center for Cancer and Blood Disorders work together with specialists in rheumatology (specialists in rheumatic autoimmune disorders like juvenile arthritis) or allergy & immunology (immune disorders) to diagnose and treat HLH. In addition to providing care, we’re teachers, authors and innovators — national leaders in our field. Since autoimmune and rheumatology care in children is much different than in adults, our pediatric specialists are board-certified and fellowship-trained to provide the highest level of care.
Regional HLH Disease Highlights
Services, programs, facilities and care teams differ at each location. Call for details.
We offer complete HLH care at Nemours/Alfred I. duPont Hospital for Children (Wilmington, Del.) and outpatient appointments at select Nemours duPont Pediatrics locations.
Our Palliative and Supportive Care Program located at duPont Hospital for Children (Wilmington, Del.) provides compassionate care for families and children coping with life-threatening or life-limiting conditions.