I have yet to meet an adult diagnosed with RDD whose disease has gone away by itself; on the other hand, I know of adults with RDD who have died prematurely due to it, or that the disease has metastasized to other areas, causingextensive morbidity and/ or death. Is it possible that Adult RDD does not mirror Childhood RDD, and if so, should it be described as a sub-class of RDD with a more ominous definition, so that doctors who review the disease for the first time will go beyond reading, "It is a disease which usually goes away by itself..." ??????
I had a pet scan to show where all of mine were located. Not happy that so many people have stated that Prednisone hasn't helped them. I'm hoping that the Mayo clinic has update research to help me.
I have been diagnosed with RDD this year. i'am 50years old. Skin tissue on both legs and the back of my body is infected. Several spots are already surgically removed. Is there currently new research to RDD? I am looking for more recent information and visual material to compare.
My 15 year old brother is diagnosed with rosai dorfman,the glands are in lymph nodes. Doctor advised to give steroids but no much improvement is seen. Really confused what to do.Can you advise any doctor in India.
Excellent. Recently MEK inhibitor is considered as promising treatment for sever or refractory cases.
Thank you!❤
I have yet to meet an adult diagnosed with RDD whose disease has gone away by itself; on the other hand, I know of adults with RDD who have died prematurely due to it, or that the disease has metastasized to other areas, causingextensive morbidity and/ or death. Is it possible that Adult RDD does not mirror Childhood RDD, and if so, should it be described as a sub-class of RDD with a more ominous definition, so that doctors who review the disease for the first time will go beyond reading, "It is a disease which usually goes away by itself..." ??????
I had a pet scan to show where all of mine were located. Not happy that so many people have stated that Prednisone hasn't helped them. I'm hoping that the Mayo clinic has update research to help me.
I have been diagnosed with RDD this year. i'am 50years old. Skin tissue on both legs and the back of my body is infected. Several spots are already surgically removed. Is there currently new research to RDD? I am looking for more recent information and visual material to compare.
Thank you for your comment. Please reach out to jeffreytoughill@histio.org for help with your question.
I am also RDD patient
How is it now
My 15 year old brother is diagnosed with rosai dorfman,the glands are in lymph nodes. Doctor advised to give steroids but no much improvement is seen. Really confused what to do.Can you advise any doctor in India.
You got treated anywhere . Anywhere in south India ??? Pls share
Aadi Yoga how was it . Is it fine now
How is he now
I have Rosai dorfman disease for 10-11 years but no treatment found yet... please help and suggest treatment in India... please