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Rosai-Dorfman Disease (Sinus histiocytosis)

Blood Cancers & Disorders | Last Active: Oct 1, 2022 | Replies (14)
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@eal

Thank you so much. Yes I have considered seeking help at a major teaching hospital or Mayo but I have no idea where to start. My doctors here have basically abandoned me so I am trying to understand the disease, try to figure out how to fix this, and work full time. I have wonderful health insurance, and even they are having trouble finding someone to help me.

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Replies to "Thank you so much. Yes I have considered seeking help at a major teaching hospital or..."
John, Volunteer Mentor | @johnbishop | Oct 6, 2020

Hi @eal, I can't imagine how difficult it is to deal with such a rare disease and still be working full time. If you would like to seek help from Mayo Clinic, you can contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63. There is a discussion that you might find helpful on getting your first appointment here: https://connect.mayoclinic.org/discussion/getting-your-first-appointment/

I just found this article from Feb 2020 that may help you learn a little more about the disease.
- Clinicopathological features, treatment approaches, and outcomes in Rosai-Dorfman disease: https://haematologica.org/article/view/9519

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