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DiscussionRosai-Dorfman Disease (Sinus histiocytosis)
Blood Cancers & Disorders | Last Active: Oct 1, 2022 | Replies (14)Comment receiving replies
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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.