Langerhans cell histiocytosis (LCH) is a rare disorder that occurs when a child has too many of a certain type of cell called Langerhans cells. These cells normally reside in the skin and help fight infection and destroy foreign substances in the body. In LCH, extra Langerhans cells spread through the blood and build up in certain parts of the body, where they can damage tissue or form tumors.
Children and teens with LCH are treated at the Dana-Farber/Boston Children's Histiocytosis Program, one of the top centers worldwide focused on these rare conditions.
At the core of the treatment team are hematologist/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.
Langerhans cell histiocytosis symptoms
Symptoms of LCH often depend on where in the body the disease is concentrated. The most common symptoms include:
It is important to understand that some symptoms of LCH may resemble those of other more common medical problems. These are general symptoms of the disease and often dependent on where in the body the disease is occurring, but do not include all possible symptoms. Because many of these symptoms can also point to other conditions, it’s important to have your child evaluated by a qualified medical professional right away for an accurate diagnosis and prompt treatment.
Langerhans cell histiocytosis causes
Doctors aren’t sure what causes LCH. There has been no evidence to suggest that it is caused by anything that can be prevented, and there is nothing that you or your child did or did not do that caused the disease to develop.
Tests that examine the organs and body systems where LCH may occur are used to detect and diagnose LCH.
Langerhans cell histiocytosis diagnostic tests typically include:
There may be other diagnostic tests that your doctor will discuss with you depending on your child's individual situation. After we complete all necessary tests, our experts meet to review and discuss what they have learned about your child's condition. Then we will meet with you and your family to discuss the results and outline the best possible treatment options.
LCH treatment varies widely. In fact, in some children, no
treatment at all is necessary – the disease will go away on its own.
Langerhans cell histiocytosis treatment may
Of course, your child's team of doctors will help determine the best approach for your
child's unique situation, based on a number of factors including:
Our Histiocytosis Research Program strives to improve our understanding and
treatment of Langerhans cell histiocytosis and hemophagocytic
lymphohistiocytosis (HLH), a less common form of histiocytosis. We offer unique
access to clinical trials in which children can receive the newest treatments, including studies
sponsored by the Histiocyte Society.
We are also a lead member of NACHO, the North
American Consortium for Histiocytosis, a consortium focused on the development
and implementation of clinical and translational studies and biological
research for histiocytic diseases, including Langerhans cell histiocytosis.
We focus on rapidly translating scientific discoveries to the bedside to benefit
patients. In order to determine the effectiveness of treatments, we have
established a clinical database to identify patterns of disease in patients
with LCH. Our scientists are also working to develop reduced-intensity
treatment strategies that have fewer short-term and long-term side effects.
Read our published LCH research
For many children with rare or hard-to-treat conditions, clinical trials
provide new options.
Participation in any clinical trial
is completely voluntary. We will take care to fully explain all elements of the
treatment plan prior to the start of the trial, and you may remove your child
from the medical study at any time.
The prognosis for children with LCH is
generally excellent. The disease is rarely life-threatening. However, some LCH
survivors experience long-term effects, such as orthopedic disabilities, hearing impairment, diabetes insipidus, and skin
scarring. Less common complications include chronic pulmonary dysfunction,
liver cirrhosis, secondary malignancies such as acute lymphoblastic
leukemia or solid tumors, and slow growth.
LCH sometimes will recur during (or shortly after) the year after stopping
treatment. There also have been reports of recurrence up to five years after
the initial disappearance of the disease.
Each child's response to LCH and its
treatments varies widely and your doctor will speak with you about your child's
LCH survivorship care
who have been treated for cancer, or cancer-like conditions such as LCH,
require ongoing, specialized care. Through our cancer
survivorship clinic, the David B. Perini Jr. Quality of Life Clinic, childhood
cancer survivors receive comprehensive follow-up evaluations from their care
team. In addition to meeting with pediatric oncologists, your child may see one
of our endocrinologists, cardiologists,
neurologists, neuro-psychologists or alternative/complementary therapy
specialists. We also offer patient and family education, psychosocial
assessment, genetic counseling, reproductive counseling, and
opportunities to speak with other childhood cancer survivors.
Phone: 617-632-5508Online form: Request an appointment
World class cancer care at the #1 children's hospital