Rosai-Dorfman Disease - FAQ

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Rosai-Dorfman Disease
The questions below specifically relate to Rosai-Dorfman Disease.

1. What causes Rosai-Dorfman?
Rosai-Dorfman involves over-production of a type of white blood cell called a non-Langerhans-cell sinus histiocyte. The cause of this over-production is not yet known.

2. Is there a cure for Rosai-Dorfman?
While many patients go into remission and live normal lives with or without treatment, we usually do not use the term “cure.” There is no established period of inactive disease before RDD is considered cured.

3. What are the different therapies/treatments commonly used to treat Rosai-Dorfman?
Many Rosai-Dorfman patients do not require treatment. Some patients with severe or persistent disease may need treatment with surgery, steroids, and/or chemotherapy. Rarely, radiation therapy is used.

4. Can an infant be tested at birth for Rosai-Dorfman?
A biopsy of the affected tissue, rather than a blood test, is required for diagnosis and would therefore not be appropriate as a routine test unless this disease is suspected.

5. What causes chronic pain in adults with Rosai-Dorfman?
Some pain and cramping can be a side effect of treatment, such as vinblastine and steroids. Pain may also be directly related to active disease. In cases of more chronic pain, some researchers suspect that cytokines, which are a type of messenger, stimulate white blood cells to release inflammatory molecules that produce pain.

Please be advised that all the information you read here is not a replacement for the advice you will get from your consultant and their team.

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