Physicians at University of Minnesota Masonic Children's Hospital have experience treating a number of histiocytic disorders, including hemophagocytic lymphohistiocytosis (HLH). This very rare-and potentially fatal-disturbance of the immune system that usually affects infants and young children.
We continue to seek innovative treatment options for these young patients, including a blood and marrow transplant (BMT).
In rare cases, when a young child’s immune system is not working properly, the body can produce too many infection-fighting white blood cells called histiocytes and lymphocytes. They accumulate in normal tissue, causing inflammation and damage to such areas as bone marrow, lymph nodes, liver, spleen and brain.
Children with HLH often develop low blood counts, bleeding and seizures. HLH may be inherited (familial HLH) or it may be caused by infections or the use of immune suppressing drugs (secondary HLH). Young infants and children are most often affected.
One child in every 50,000 births will acquire HLH.
Children who come to us with a diagnosis of HLH will have several tests so our physicians can evaluate the extent of the disorder and look for infections and organ damage. These tests might include taking a sample of bone marrow or collecting spinal fluid, in addition to imaging such as x-ray, CT scan, ultrasound or MRI.
Early treatment of HLH is very important, as the condition is life-threatening. We believe the first step in treating HLH is to get it into remission through chemotherapy and immunosuppressive medications. Our physicians may also prescribe medications to treat any infections that are present.
Blood and Marrow Transplantation
A BMT is the only hope for a cure for children with HLH. While a transplant from a sibling is usually the best option, our physicians are leaders in research that has led to the successful use of bone marrow from unrelated donors or umbilical cord blood. Because of this, a donor can be identified for the majority of children with HLH.
Patients who are candidates for BMT will begin preparations for transplant. Learn more about what to expect during the transplant process.
We believe in the value of a multidisciplinary care team, regardless of the treatment option chosen. If a BMT is indicated, our entire BMT team will be involved, with the following providers leading the care and treatment plans for patients with HLH:
We continue to explore novel ways to increase cure rates and improve quality of life for patients with HLH. We also collaborate with other researchers around the world, keeping our program at the forefront of transplant care globally. Learn more about current research projects here.
HLH transplant patients may be eligible for clinical trials, taking advantage of the latest breakthroughs in therapies and treatments. View a list of open trials.
For additional information on HLH, visit these websites: