The Histiocytosis Clinic helps adults with a rare group of blood disorders that can cause a host of symptoms throughout the body. With histiocytosis disorders, white blood cells called histiocytes multiply and spread throughout the body, leading to organ damage. These disorders can be slow growing or, sometimes, life-threatening. Treatments are available to cure these disorders.
Types of histiocytic disorders include Erdheim-Chester disease, Langerhans cell histiocytosis and Rosai-Dorfman disease.
Our team of world-renowned experts offer diagnostic and treatment services for this serious and complex group of conditions at Mayo Clinic in Rochester, Minnesota.
Advanced diagnosis and treatment
The symptoms of histiocytosis disorders can be varied and depend on the organ involved. Examples are loss of balance, double vision, changes in gait and speech, and skin rash. This condition can be confused with other conditions, such as inflammatory disorders of the brain or spine.
Timely diagnosis and expert care can make a big difference in the lives of people with this condition. The Histiocytosis Clinic is uniquely equipped to ensure that you have the correct diagnosis and determine the best treatment for you.
Our doctors may have you undergo special tests to pinpoint the exact type of histiocytosis disorder you have. Testing, when done correctly by experts familiar with this disease, may not only yield a diagnosis but also inform how best to treat you.
Tests that might help determine a diagnosis include:
Knowing what you have affects the choice of treatment and how you live with the condition. People with histiocytosis disorders might take a wait-and-see approach, as some people can live for many decades without treatment. Or they may be offered advanced treatments to cure the disease or ease symptoms. There also are many symptoms that come with histiocytosis disorders that can be managed in several ways.
With some histiocytosis disorders, you may need to take medicine for the rest of your life. You also may benefit from ongoing support, such as physical therapy and support groups for people with similar conditions.
There are clinical trials underway to identify effective treatments for the various types of histiocytosis disorders. Talk with your doctor about whether any such studies might benefit you.
A team-based approach
The multidisciplinary approach of the Histiocytosis Clinic means that you receive evaluation from doctors in various fields and a personalized plan of care in a timely way. The experts of this clinic also offer second opinions. If you wish, the clinic will send a full report to your primary care professional or other referring healthcare professional.
Because histiocytosis disorders can affect many parts of the body, your care team might include specialists in hematology, neurology, dermatology, endocrinology, pathology, pulmonology, radiology, rheumatology and bioinformatics. Your team works together to make sure you get exactly the care you need.
Expertise and rankings
Mayo Clinic has some of the world's foremost experts in histiocytosis disorders and is a major referral center for these rare conditions. Each year our experts at Mayo Clinic in Rochester, Minnesota, evaluate more than 350 adults with these conditions. Because so many people come to us for help, our doctors are very familiar with the many ways these disorders can affect the body. This is key to selecting the best treatment for you.
Our team members are part of Mayo Clinic-University of Alabama at Birmingham Histiocytosis Working Group. This group meets regularly to discuss cases, treatment and clinical trials. It has established clinical practice guidelines that are recommended by the National Comprehensive Cancer Network (NCCN). The NCCN is a select group of cancer centers in the United States with special expertise.
Mayo Clinic is top-ranked in more specialties than any other hospital and has been recognized as an Honor Roll member according to the U.S. News & World Report's 2024-2025 "Best Hospitals" rankings.
Learn more about Mayo Clinic's neurosurgery and neurology departments' expertise and rankings.
Research and innovation
Mayo Clinic physician-scientists are worldwide leaders in advancing the understanding of histiocytosis disorders. They also are founding members of the Mayo Clinic-University of Alabama at Birmingham Histiocytosis Working Group. This group has:
- Described the long-term outcomes with new treatments.
- Described forms of these conditions restricted to the eyes, lungs or brain.
- Described the symptoms and imaging aspects that can help doctors recognize various types of these disorders.
Mayo Clinic's physician-scientists are committed to research that improves diagnosis and treatment for people with these diseases. They have published many research studies on the topic and as part of the Mayo-Alabama collaborative in 2021 set the guidelines for how to help people with these conditions.
Our doctors apply proven breakthrough discoveries to the care of people they see in the Histiocytosis Clinic. Talk with your doctor about potential new ways to diagnose and treat histiocytic disorders that might benefit you. You also might ask whether you are eligible for any clinical trials and other research studies.
The multidisciplinary team of experts in the Histiocytosis Clinic also benefit from the Mayo Clinic research infrastructure provided by the Center for Multiple Sclerosis and Autoimmune Neurology. This resource is critical for the accurate diagnosis of histiocytic disorders and for developing new cures.
Histiocytic disorders clinical trials
Publications
See a list of publications about histiocytic disorders by Mayo Clinic doctors on PubMed, a service of the National Library of Medicine.
Mayo Clinic has one of the largest and most experienced practices in the United States, with campuses in Arizona, Florida and Minnesota. Staff skilled in dozens of specialties work together to ensure quality care and successful recovery.
Research profiles
- N. Nora Bennani, M.D.
- Surendra Dasari, Ph.D.
- Caroline J. Davidge-Pitts, M.B., B.Ch.
- Ronald S. Go, M.D.
- Matthew J. Koster, M.D.
- Jay H. Ryu, M.D.
- William Oliver Tobin, M.B., B.Ch., B.A.O., Ph.D.
- Robert Vassallo, M.D.
Mayo Clinic is consistently ranked among the top hospitals in the United States by U.S. News & World Report. Our world-class experts work together to provide comprehensive care to more than 1 million patients from over 130 countries every year. People who come to Mayo Clinic are frequently among the first to benefit from innovative therapies, new techniques and technology, and clinical research trials. Because we are continuously researching and developing new treatments, we can inspire new hope.
Appointments
You may be referred by your primary care professional, or you may make an appointment without a referral.
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