"How I Diagnose Rosai-Dorfman Disease" with Dr. Ravindran and Dr. Rech
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- Опубліковано 5 жов 2024
- In this video, Aishwarya Ravindran, M.D from University of Alabama, Birmingham and Karen Rech, M.D. with Mayo Clinic Rochester speak with Executive Director Deanna Fournier about their recently published article "How I Diagnose Rosai-Dorfman Disease."
You can read the article here: bit.ly/3p4IgJo
I was diagnosed in Sept 2008 at the age of 17 after my first sign/issue in Dec 2007. After going through almost a dozen different specialist. Although it was a long 5 year journey after my diagnosis. The diagnosis was only the beginning. A big thank you to John’s Hopkins Hospital!! They literally saved my life.
Was just diagnosed in April. What symptoms did you experience? And what treatment did you receive?
@@kareemmeredith8469 prayers for a speedy recovery to you! Hopefully yours has not attacked your vital organs. Which made mine 100x worse. I originally had a sharp pain in my left femur that woke me out of my sleep. Months later the bone & joint specialist found that I had a tumor eating away at my left femur. I had to go into emergency surgery. My left femur was packed with pallets and then I had to learn how to walk again for the next 3 months. I thought everything was over and then my friends said they noticed I was slimming down (I’m a bigger girl) I then realized I wasn’t eating like I normally do. Then one day I wasn’t able to go #2 for days. I started throwing up instead. I was rushed to Hershey Hospital and they found another tumor wrapped around my rectum and tailbone. This was the tumor that caused years of ICU surgeries, a colostomy, an ileostomy, 4 years of Chemotherapy and a boat load of other unnecessary treatments, and other health issues I now will endure for the rest of my life because of a particular hospital (I won’t mention). Thankfully I don’t remember it all. My gramdmom says she believes God gave me the ability to not remember most of what I went through or she thinks I would have serious PTSD. But I am now in remission 11 years. You will get through this though. Just make sure you keep the faith. 💪🏾🙏🏾💙🤍🎗️✨
@@kareemmeredith8469 let me not forget to mention, a lot of what I endured unnecessarily could have been prevented, but because the “teaching” hospital I was going to was more concerned about being the first to diagnose this “mysterious disease”, they rather watch me die than reach out to other hospitals/networks to figure it out. I was misdiagnosed twice and treated for other diseases which led to my now permanent diabetes, high blood pressure and other health issues. So my biggest advice is ALWAYS GET A SECOND OPINION! No matter what!!
I was just diagnosed In June2023. Two painful lumps on the side of my breast. I go to my first Cancer Treatment Center Wednesday. Wish me luck ❤
@@aprilgillis2482 prayers to you!! If you catch and treat it early…you should be okay #GodWilling 🤲🏾🙏🏾
Thank you so much for posting this video. My son has been diagnosed with this condition and has recently had surgery to move the tumors. However there are still lesions present and we need help. I would love to reach out to you for questions
Our hearts are with you to hear about your son's diagnosis. We would love to help. You can reach us at info@histio.org or +1-856-589-6606; we can help you find a doctor and can answer questions about RDD management, treatment, and more. We have you in our prayers!
i was diagnosed 2009 after 1 surgery 4 masses have formed. I'm in Atlanta and need a doctor was my appointment to see a specialist is in October..
I'm sorry for all you've been through. Hope the appointment with the specialist goes well!
ابني توفي وعمرة تسع سنوات بمرض روزي دروفمان وكانت المدة من. بداية المرض حتى توفي 21 يوما ممكن ان تقولوا لي ماهو السبب الرئيسي لهذا النرض
I have been diagnosed with RDD here in the Philippines and it seems like there’s no RDD specialist or expert here. What can you recommend?
Hi Franzdeguzman, we actually know of a specialist who does cover RDD. Crispin Dalisay of Zamboanga City Medical Center. Here is their number: 63 62 993 1856
Please let us know at Info@histio.org if you need any more details for that doctor.
@@Histiocytosis hi, I got a hold of Dr Dakutan from St Lukes Medical Center (I am from Manila) and will see him next week to see if they are familiar. My ENT is suspicious of my neck mass since its really fast growing (almost doubled the size in a week) but pathology already returned RDD as result. He recommended to have my pathology report read by another pathologist to be sure since he suspects its cancer. Is this possible?
My son died of Rosie Duffman disease. The duration of his illness was only 20 days,
as he developed swelling in the gland located in the sinuses, and I did not find any treatment for him. He developed anemia and severe weakness in the body’s structure, and the tumor in the sinuses developed significantly. I would like to ask: Is there a specific cause for this disease? Rosie Duffman
Our hearts are with you and we are deeply saddened to hear about the loss of your son.
While there is no one specific cause for histiocytosis including Rosai Dorfman Disease, scientists recently discovered genetic mutations that are present in over 50% of people with a histiocytic disorder; these genetic mutations likely develop due to an immune response to something (an injury, a virus, etc.) and the histiocytes, a form of white blood cells, overproduce causing tumor formation and organ damage.
If you have any specific questions or would like to speak with someone on our team, you can reach us at info@histio.org or 856-589-6606.
I just recently had a biopsy done on my right lacrimal gland. The pathology report recently arrived. It is as follows:
Right eye biopsy: fibrous and fatty tissue with lymphoid/plasmacytic hyperplasia and histiocytic infiltrate: likely Rosai-Dorfman-Destombes disease.
Also followed up with:
BRAF gene mutation analysis has been requested. Results will be communicated in an addendum.
What are your thoughts?
Please feel free to reach out to us at 856-589-6606 or info@histio.org - the staining to confirm Rosai-Dorfman Disease is important because histiocytes are present with other diagnoses. If you have a confirmed diagnosis, you can see a histiocytosis expert and we can help you identify a physician in your area. The mutation analysis will help with determining the best course of treatment. We have you in our thoughts and prayers!
@@Histiocytosis update: I have since been referred to the lymphoma clinic of the hospital that is treating me. I have since had a CT scan done of my head and neck, as well as my chest. Nothing noteworthy found. The treating doctor is leaning towards prednisone for treatment. But not before I have a pet scan done, which I now await. Blood sample results also show a high igG4 reading, whatever that is. I'm being told that this RDD is so rare that only 600 some odd cases exist worldwide from 1969 up to present. My symptoms are enlarged lacrimal glands, enlarged lymph nodes on my neck, constant random itches on my arms and legs, complete loss of smell and constant "plugging up" of my ears that I can't yawn with enough force to "free up". Sometimes my ears plug up enough to where my hearing is reduced significantly.
@@michaelchan8915 Thank you for the update. We are glad to hear you are clear for RDD, but disappointed there is no diagnosis yet. We hope you get some answers and relief for your other symptoms soon.
If you have any other questions as to if it is histio related, please feel free to reach out to us at info@histio.org or 856-589-6606
@Histiocytosis Can you give me Doctors near Charlotte NC? I have been trying to get diagnosed for 4 years now. Erdheim Chester, Igg4, Sarcoidosis, and rosai dorfman have been named as possibilities but no one knows for sure. I have seen over 10 Doctors. I've even been to Duke and Mayo. I'm exhausted