You might brush off your constant tiredness or swollen glands as a passing virus. But what does it mean when they won’t go away?
Sometimes, symptoms for rare blood conditions like Rosai-Dorfman disease (RDD) often look and feel like an everyday illness. So, it can be a real surprise to get this diagnosis. While it might explain why you haven’t felt great, you’re probably wondering what this all means — and what your future might look like.
Cleveland Clinic’s expert healthcare providers have answers and the compassionate care you need. As you begin to wrap your head around this new diagnosis, we’re here to listen to you and answer your questions. We want to understand your story and concerns so we can find the best treatment for your needs.
We offer every available treatment for RDD — surgery, targeted therapy, immunosuppressive medications, chemotherapy and radiation. And we’re quick — our providers do their best to see anyone with confirmed or suspected RDD from anywhere in the country within five business days.
RDD affects each person differently. Cleveland Clinic’s experts recommend treatments based on your individual symptoms and personal needs. We may take a “wait-and-watch” approach. Or use minimally invasive therapies to help you manage symptoms. We recommend more intense treatments and surgical approaches only when you need them.
Rosai-Dorfman disease often requires care from providers across different specialties. Your care team of experts works together to create a care plan based on how RDD affects you. We’re here to help every step of the way, from diagnosis to regular follow-up care. Meet our team.
Cleveland Clinic’s active research program helps us improve diagnosis, treatment and your quality of life if you have a blood condition. Clinical trials may give you access to the latest treatment not widely available.
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Cleveland Clinic is a trusted healthcare leader. We’re recognized in the U.S. and throughout the world for our expertise and care. Our blood diseases program is listed as a center of excellence by the National Organization of Rare Diseases (NORD).
Rosai-Dorfman disease is a benign (not cancerous) blood condition. It starts when histiocytes, a type of white blood cells, start growing out of control. There are two types:
Diagnosing Rosai-Dorfman disease isn’t always easy. Symptoms can vary from person to person. You may have none and learn you may have RDD through routine bloodwork or imaging done for some other reason (such as mammogram or CT scan) or after a colonoscopy. And common symptoms — swollen lymph nodes, fever, fatigue and night sweats — are often like those from other conditions. RDD can also happen with certain cancers like lymphomas or rheumatologic conditions such as lupus (systemic lupus erythematosus). That’s why it’s important to work with providers experienced in diagnosing and treating RDD.
When you come to your first appointment with us, you may feel a little stressed — and have many questions. That’s why your provider will start off by getting to know you. They’ll take time to listen to your concerns, answer your questions and even ask some of their own, like:
You’ll also have a thorough physical exam. Your provider will look for signs of RDD, like swollen lymph nodes or skin growths.
Your provider will also order a series of tests to help them rule out other conditions and to confirm a Rosai-Dorman disease diagnosis. You may have:
Cleveland Clinic has all the providers you need to manage your RDD. A hematologist will lead your personalized care team. You may also see:
Your care team works together to confirm a diagnosis and help you move forward with your personalized RDD treatment.
Our healthcare providers see patients at Cleveland Clinic Main Campus.
We personalize your Rosai-Dorfman disease treatment around how and where it affects you — and how it’s progressed. We’ll use your test results as a guide when crafting your care plan. We’ll also consider your age, overall health and lifestyle.
Rarely, RDD goes away on its own. You may only need “watchful waiting.” This means we won’t do treatment. Instead, we’ll keep an eye on your symptoms. And if they get worse, or new ones arise, we may recommend one or more treatments, including:
Your care team may recommend treatments like these that can attack histiocytes throughout your body:
While RDD may respond to treatment, it sometimes can come back (recur) — so RDD has to be monitored the rest of your life. But we’ll track your health with regular follow-up visits and testing either at Cleveland Clinic or in coordination with your local providers. And we’ll ask you to talk openly and honestly with your provider about any new symptoms. This helps us start treatment again as quickly as possible.
When those swollen lymph glands are more than a passing infection, you can count on Cleveland Clinic to help you take the next step. Our compassionate team answers your questions about having (and treating) Rosai-Dorfman disease. We guide you through personalized treatment and follow-up care so you can feel like yourself again.
Getting an appointment with Cleveland Clinic’s Rosai-Dorfman disease experts is easy. We’re here to help you get the care you need.
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