A “hem/onc” is a doctor who focuses on diseases of the blood and cancer. This doctor specializes in conditions like primary HLH and will help direct your or your child’s treatment plan.

Depending on your treatment journey, your doctor will determine if you or your loved one may need a bone marrow transplant. In this case, a team of transplant specialists will guide you through the process.

Many hospitals have social workers on staff to help families cope with diseases like primary HLH. A social worker can help you get the support you might need during this time. This could include emotional support, help navigating the health care system, finding financial resources, and more.

Multiple nurses may be involved in your or your child’s care. Nurses will assist your doctor with general care, setting up and monitoring infusions, and appropriate care at home.

Rheumatologists specialize in treating disorders of the muscles, bones, and joints, and are also experts in managing dangerously overactive immune systems like those seen in patients with primary HLH. A rheumatologist may be involved to help guide your diagnosis or any medications to calm the immune system.

Because primary HLH can affect the organs like the liver, spleen, and digestive system, your team may involve a hepatologist or gastroenterologist. A hepatologist helps manage issues with the liver and gastroenterologists help assess and manage issues with the digestive system, including the spleen, stomach, etc.

A genetic counselor can help you understand the results of a genetic test that confirms the primary HLH diagnosis, as well as what to expect based on those results.

An infectious disease specialist diagnoses and treats serious infections, like those that might occur in a patient who has primary HLH.

These doctors treat symptoms that need attention right away. Critical care specialists usually work in the intensive care unit of a hospital. Pediatric critical care doctors and nurses have special training in treating infants and children.