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Rosai-Dorfman Disease (Sinus histiocytosis)
Blood Cancers & Disorders | Last Active: Aug 17 4:11pm | Replies (16)Comment receiving replies
I have no idea how much it feels to find someone who has a similar diagnosis. I was diagnosed in Feb of this year 2025. How much has your disease progressed. Mine is in the sinus and Left eye area.
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Welcome, @jackieokoth, I'm tagging @eal @cblowers1 and @lilrush to bring them back to this discussion about Rosai-Dorfman disease (sinus histiocytosis).
Jackie, this is all so recent for you. I can imagine it feels to good to not feel alone and to know there are others out there with a similar diagnosis.
Did you know Mayo Clinic has a team at their Histiocytosis Clinic dedicated to helping adults with histiocytosis disorders, such as Erdheim-Chester disease, Langerhans cell histiocytosis and Rosai-Dorfman disease?
- Histiocytosis Clinic in Minnesota https://www.mayoclinic.org/departments-centers/histiocytosis-clinic-minnesota/overview/ovc-20566040
Jackie, what treatment are you on? How are you doing?