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Rosai-Dorfman Disease (Sinus histiocytosis)

Posted by roger191 @roger191, Jan 20, 2019

Hello I was wondering if anybody here has ever heard of this autoimmune disease. If so, what treatment worked for you. Thank you

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cblowers1 | @cblowers1 | Oct 7, 2020
In reply to @johnbishop "Hi @eal, I can't imagine how difficult it is to deal with such a rare disease..." + (show)
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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.

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eal | @eal | Oct 7, 2020
In reply to @johnbishop "Hi @eal, I can't imagine how difficult it is to deal with such a rare disease..." + (show)
Profile picture for John, Volunteer Mentor @johnbishop

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

Jump to this post

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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lilrush | @lilrush | Sep 25, 2022
In reply to @eal "Thank you! I have filled out an appointment request and will wait and see what happens...." + (show)
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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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I was hospitalized back in May of this year for a few weeks. After a neck lymphnoid biopsy I was diagnosed with sinus histiocytosis. While in the hospital my body started shutting down I ended up in intubation on life support for a week. I see a oncologist hematologist a primary care doct and a gasternologist. Right now they have me on prednisone and a up keep antibiotic to take every other day. My oncologist Is probably going to be switching me he said to a auto immune drug but he didn't say what kind. I still get swollen lymphnoids I have muscle pain everyday. I'm even loosing my hair sadly. I also work but only part time since I got sick I also have 4 young children so I know how hard it is living with this rare condition. Especially when everyone tells you they don't know enough about it or they can't help. It's hard and stressful.

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Colleen Young, Connect Director | @colleenyoung | Oct 1, 2022
In reply to @lilrush "I was hospitalized back in May of this year for a few weeks. After a neck..." + (show)
Profile picture for lilrush @lilrush

I was hospitalized back in May of this year for a few weeks. After a neck lymphnoid biopsy I was diagnosed with sinus histiocytosis. While in the hospital my body started shutting down I ended up in intubation on life support for a week. I see a oncologist hematologist a primary care doct and a gasternologist. Right now they have me on prednisone and a up keep antibiotic to take every other day. My oncologist Is probably going to be switching me he said to a auto immune drug but he didn't say what kind. I still get swollen lymphnoids I have muscle pain everyday. I'm even loosing my hair sadly. I also work but only part time since I got sick I also have 4 young children so I know how hard it is living with this rare condition. Especially when everyone tells you they don't know enough about it or they can't help. It's hard and stressful.

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Welcome @lilrush. I'm tagging @eal to make sure your message to them is seen. Your situation is remarkably similar.

I can't imagine working part time with 4 children and managing sinus histiocytosis. This is all relatively new for you. Were you experiencing symptoms long before you were finally diagnosed? What accommodations have you made in your daily routine that help?

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Jackie O | @jackieokoth | Aug 4 3:37pm

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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Colleen Young, Connect Director | @colleenyoung | Aug 17 4:11pm
In reply to @jackieokoth "I have no idea how much it feels to find someone who has a similar diagnosis...." + (show)
Profile picture for Jackie O @jackieokoth

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?

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