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Hi Dominique, alternate therapies like chemotherapy may be the route to go. It all depends on which type of chemo your physician recommends once you express how ineffective this course of treatment has been.

Carolyn - we encourage you to consider joining our peer support calls to connect with others, or if interested, you can email us at info@histio.org and we can try to connect you with other who have PLCH. www.histio.org/peer-chats

@Histiocytosis Thank You so much my mental health has declined so much I've thought about suicide n I know that's wrong

Hi, you can read it here: www.ncbi.nlm.nih.gov/pmc/articles/PMC7614120/

Hi - sinus histiocytosis does not automatically mean that a histiocytic disorder is present; histiocytes are your white blood cells and there can be an overabundance of them without having histiocytic disorder/disease. You might consider reviewing the following information with your provider and having them look closely at the pathology. There is specific staining that must be done for LCH, RDD, ECD, and other histiocytic disorders. histio.org/histiocytic-disorders/rosai-dorfman-disease/ - if you have any questions, please reach out to us at info@histio.org.

Sir please share ph no my son single site lch diagnos last year share same information

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?

I'm sorry for all you've been through. Hope the appointment with the specialist goes well!

Hi Brandi, we have not heard of any cases like that. We actually brought your question to Dr. Atila, the physician in this video, and he said if it happens/happened "Either this is pure coincidence, or I could imagine the following: The mother could have a very mild congenital/hereditary form of DI/AVP-D. Pregnancy could then lead to an increased degradation of vasopressin by the placenta, and symptoms would then appear for the first time during pregnancy and “resolve” after pregnancy. We sometimes see this in very mild forms" He added that he would suggest a genetic test to the mother. Hope that helps answer your question!

This trial is Langerhans cell based, and RDD does fall into that. So yes, they should be able to enroll him.

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!

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

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.

We're so sorry to hear that. That's devastating. How long ago did that happen?

Hi Barbara, sorry to hear about the loss of your daughter. Unfortunately, the scholarship window has closed for this year, but Madelyn can apply for a scholarship next year, sometime in mid-spring, when it opens again.

histio.org/resource-overview/scholarship-program/

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 🤲🏾🙏🏾

Lamentamos escuchar eso, Zuletma, ¿te gustaría hablar más con nosotros por teléfono o correo electrónico? Nuestro número es 1-856-589-6606 y puede comunicarse con nosotros en info@histio.org. Estamos a su disposición y nos encantaría ver de qué otra manera podemos ayudarlo con el viaje de su hijo.

Do you notice that there is an improvement? Cause my So has got too.

Good morning, depending on where you are, you may be able to get at least some support for care. If you're in the US we just compiled a guide with some North American Resources (mostly in the US) for pediatric care.

@@Histiocytosis Unfortunately, I am not from America.. In our country, there is no care or this medicine to treat these cases

@@Histiocytosis I wish recovery for every patient