Hemophagocytic lymphohistiocytosis (HLH) is a rare but potentially fatal condition in which certain white blood cells (histiocytes and lymphocytes) build up in and damage organs, including the bone marrow, liver, and spleen, and destroy other blood cells.
Children and teens with HLH are treated at the Dana-Farber/Boston Children's Histiocytosis Treatment Program, one of the top centers worldwide focused on these rare conditions.
At the core of the treatment team are hematologists and oncologists who specialize in treating children with histiocytosis. Because many organ and body systems may be involved with the disease, a patient’s treatment team may also include dermatologists, pulmonologists, endocrinologists, gastroenterologists, neurologists, dentists, orthopedic surgeons, neurosurgeons, radiologists, and radiation oncologists. All senior medical staff participate in clinical research activities, so our patients have access to the very best and up-to-date treatments available.
The symptoms of HLH include:
Children with HLH
may also have central nervous system symptoms, including headache,
irritability, sleepiness, or seizures.
diagnose HLH with:
HLH may be fatal if
untreated. Rapid diagnosis and early therapy are key. The most common
Familial HLH is fatal without treatment, with median survival of about
two to six months. Chemotherapy and/or
immunotherapy temporarily control the disease, but symptoms inevitably return. Stem cell transplant is the only way to cure
familial HLH. The five-year survival
rate for children who have undergone a stem cell transplant is 66 percent. Infections, especially fungal infections, are
an important cause of death in children with HLH.
Secondary HLH can be effectively treated with
chemotherapy and/or immunotherapy medications. Stem cell transplant is not necessary in most cases of secondary
HLH. However, children without a known
genetic cause for the HLH who experience progressive or recurrent disease are
candidates for stem cell
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Neuroimmunology specialists and stem cell transplant experts team up to treat Emily and arrest familial HLH.