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Rosai-Dorfman Disease (Sinus histiocytosis)
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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The authors of the February 2020 article that you cite are all members of a Mayo Rochester working group for histiocyte disorders led by Dr. Ronald Go. I have Langerhans cell Histiocytosis which is diagnosed in 1-2 persons per million population. I think that Rosai-Dorfman disease is even more rare. I recommend going to Mayo or to another large center such as Dana Farber, Boston that has doctors with interest in these rare diseases and can help you with a treatment plan.
For an recent video overview of these diseases, go to Texaschildrens.org/departments/Histiocytosis-clinic. Many of these diseases are found primarily in children, but can be diagnosed at any age.
Thank you! I have filled out an appointment request and will wait and see what happens. You have no idea how much I appreciate your help. You have made my day and I greatly appreciate you!
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