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Histiocytosis Association
США
Добавлен 9 янв 2012
The Histiocytosis Association, a non-profit organization registered with the Federal Government, is dedicated to helping those dealing with the effects of rare histiocytic disorders by providing a variety of educational programs and emotional support services. In addition, the Association promotes examination of histiocytic disorders through scientific and medical research, with the aim of establishing better treatments, a cure, and ultimately, prevention of the diseases.
Nate Awareness Full Interview
Here is the full version of Histio Ambassador Nate awareness video. He was asked a series of questions for the Instagram Reel and here he thoroughly answers them all in a moving interview.
Chapters:
Beginning and intro 00:00
How long did it take for you to be diagnosed with HLH? 0:37
At what point did you realize your life would never be the same? 1:05
How do you explain histiocytosis to someone who is unfamiliar with it? 2:24
Is there something you wish people knew about your disease without having to tell them? 6:09
Can you think of an instance where your experience helped someone else? 8:56
How have you adapted to this disease and how has it affected your family? 11:27
What did you do to get yo...
Chapters:
Beginning and intro 00:00
How long did it take for you to be diagnosed with HLH? 0:37
At what point did you realize your life would never be the same? 1:05
How do you explain histiocytosis to someone who is unfamiliar with it? 2:24
Is there something you wish people knew about your disease without having to tell them? 6:09
Can you think of an instance where your experience helped someone else? 8:56
How have you adapted to this disease and how has it affected your family? 11:27
What did you do to get yo...
Просмотров: 28
Видео
HLH and Cancer: Translating Research into Patient Care
Просмотров 759 часов назад
This webinar from 9/5/24 was hosted by Adi Zoref-Lorenz. It featured an overview, symptoms, diagnosis, and importance of early detection of Understanding HLH and malignancy-associated HLH. Treatment and management - Current and emerging therapies, and challenges in treating malignancy-associated HLH The INTO-HLH registry - Building a Community of Hope - Purpose and how to participate And a Q&A ...
Pulmonary Hypertension in Pulmonary Langerhans cell histiocytosis
Просмотров 1242 месяца назад
Pulmonary Langerhans cell histiocytosis is a condition that mainly affects the lungs. There is a strong overlap between those with PLCH and Pulmonary Hypertension. In this webinar, Dr. Jay Ryu and Dr. Hillary DuBrock go through both conditions and talk about some of the causes and overlap between the two conditions.
Mixed Histiocytic Neoplasms Publication Interview w/ Dr. Eli Diamond
Просмотров 822 месяца назад
In the start of her road trip era this summer, Deanna Fournier sat down with Dr. Eli Diamond to talk about his publication: "Mixed Histiocytic Neoplasms - a multi-center series revealing diverse somatic mutations and responses to targeted therapy" Click here to view the full abstract on Pub Med: pubmed.ncbi.nlm.nih.gov/38613141/
Return to School after Hematopoietic Cell Transplant Interview
Просмотров 862 месяца назад
Executive Deanna Fournier and Secretariat Kathy Wisniewski sat down with Dr. Neel Bhatt from University of Washington and Fred Hutchinson Cancer Center to talk about his paper: "Return to school practices after hematopoietic cell transplantation: a survey of transplant centers in the United States" You can read the abstract here and access the full article through Nature Portfolio: pubmed.ncbi....
Differential Effects of JAK1 vs. JAK2 Inhibition in Mouse Models of HLH
Просмотров 653 месяца назад
Last month Executive Director Deanna Fournier sat down with Dr. Camile Keenan from Seattle Children's Hospital and Dr. Sabrin Albeituni from St. Jude Children's Research hospital to talk about their publication: "Differential Effects of JAK1 vs. JAK2 Inhibition in Mouse Models of Hemophagocytic Lymphohistiocytosis" Click here to full the article's abstract: ashpublications.org/blood/article-abs...
2024 Scholarship Reaction Compilation
Просмотров 3123 месяца назад
A compilation of the introductions to the scholarship winners and their reaction to their winning applications.
"Long-term outcomes among adults with LCH" w/ Dr. Goyal and Dr. Acosta Medina
Просмотров 1953 месяца назад
In this video, executive director Deanna Fournier sits down with Dr. Gaurav Goyal from the University of Alabama Birmingham and Dr. Aldo Acosta Medina from Mayo Clinic, Rochester MN, to talk about their publication "Long-term outcomes among adults with Langerhans Cell Histiocytosis" in Blood Advances this past year. They cover topics from single and multi-system LCH, survivorship surveys and qu...
Malignant Histiocytosis Clinical Interview w/Dr Gaurav Goyal and Dr. Gordan Ruan
Просмотров 1524 месяца назад
In this video, which follows our Malignant Histiocytosis Pathology video (ruclips.net/video/RUzBdpoZs7s/видео.html), Deanna sits down with Dr. Gaurav Goyal and Dr. Gordan Ruan from the University of Alabama Birmingham and Mayo Clinic respectively, to discuss the clinical aspects of Malignant Histiocytosis, a rare form of histiocytosis, as studied in their recent publication: "Clinical character...
Malignant Histiocytosis Pathology Interview
Просмотров 2524 месяца назад
A few weeks ago, Executive Director Deanna Fournier sat down with Dr. Aishwarya Ravindran and Dr. Karen Rech, from UAB and Mayo Clinic, respectively to talk about their publication on Malignant Histiocytosis (MH). This video covers the pathology of Malignant Histiocytosis, next time, we will have an interview with Dr. Gurav Goyal and Dr. Gordan Ruan about the clinical aspects of MH. Click here ...
Seminario web sobre deficiencia de vasopresión de arginina en español
Просмотров 1715 месяцев назад
La deficiencia de AVP es una enfermedad basada en la hipófisis (en la glándula hipofisaria), común en LCH, RDD, ECD y XG. Para quienes lo enfrentan, puede haber sido uno de los síntomas iniciales que llevaron a su diagnóstico, o un descubrimiento desafortunado después de haber sido diagnosticados. Cualquiera que sea el diagnóstico durante su recorrido por la histiocitosis, es un síntoma complej...
Histio patients: What diabetes insipidus is (AVP-D / CDI) and how to manage it.
Просмотров 1825 месяцев назад
AVP-Deficiency is a pituitary based disease, common in LCH, RDD, ECD and XG. For those who face it, it may have been one of the initial symptoms that led to their diagnosis, or an unfortunate discovery after they were already diagnosed. Between different medications to manage vasopressin levels, figuring out proper water intake, and fighting other side effects, AVP-Deficiency is a challenge. Th...
ANHL2121 Clinical Trial DayOne Interview
Просмотров 775 месяцев назад
This video is meant to inform providers/health care professionals about a clinical trial opportunity; families are encouraged to share the information and video with their histio provider. This phase II trial tests the safety, side effects, best dose and activity of tovorafenib (DAY101) in treating patients with Langerhans cell histiocytosis (LCH) that is growing, spreading, or getting worse (p...
Interview on Neurodegeneration in LCH with Dr. Ken McClain, Dr. Carl Allen, and Dr. Jen Picarsic.
Просмотров 2355 месяцев назад
In this video Executive Director Deanna Fournier interview Dr. Ken McClain, Dr. Carl Allen and Dr. Jennifer Picarsic on their paper "Circulating senescent myeloid cells infiltrate the brain and cause neurodegeneration in histiocytic disorders" Special Thanks to Dr. Matthias Wilk for his work as Principal Investigator on this research. We hope to speak with him at a later date about this work.
Promises and caveats for targeted therapies in high-risk and CNS disease from LCH.
Просмотров 1056 месяцев назад
Executive Director Deanna Fournier sat down with Dr. Oussama Abla of Toronto's Sick Kids Hospital to discuss the key takeaways from his study presented at 2023 American Society of Hematology Annual Meeting: Langerhans cell histiocytosis: promises and caveats of targeted therapies in high-risk and CNS disease.
Histio Student Scholarship Recpient Joseph Raty Impact Interview
Просмотров 1856 месяцев назад
Histio Student Scholarship Recpient Joseph Raty Impact Interview
NEW Danaher-IGI Beacon for CRISPR Cures center and their groundbreaking research into HLH!
Просмотров 2216 месяцев назад
NEW Danaher-IGI Beacon for CRISPR Cures center and their groundbreaking research into HLH!
Dr. Zoref Lorenz Grant Award Summary
Просмотров 477 месяцев назад
Dr. Zoref Lorenz Grant Award Summary
Dr. Zoref-Lorenz and Dr. Michael Jordan on "Inpatient Recognition and Management of HLH"
Просмотров 1347 месяцев назад
Dr. Zoref-Lorenz and Dr. Michael Jordan on "Inpatient Recognition and Management of HLH"
Bridging the Gap of Bone Marrow Transplant Care:
Просмотров 617 месяцев назад
Bridging the Gap of Bone Marrow Transplant Care:
Transition of Care from Pediatric to Adult Webinar
Просмотров 828 месяцев назад
Transition of Care from Pediatric to Adult Webinar
Interview with Dr. Ashish Kumar on "Novel Therapy for LCH Maintains 100% Response Rate"
Просмотров 2118 месяцев назад
Interview with Dr. Ashish Kumar on "Novel Therapy for LCH Maintains 100% Response Rate"
HLH Research: Progress, Importance, and the Role You Can Play
Просмотров 1139 месяцев назад
HLH Research: Progress, Importance, and the Role You Can Play
Under the Microscope - Histiocytosis Pathology
Просмотров 52610 месяцев назад
Under the Microscope - Histiocytosis Pathology
Twice Blessed - Anna Grace's Story
Просмотров 1,1 тыс.11 месяцев назад
Twice Blessed - Anna Grace's Story
2023 Histio Student Scholarship Reaction Video
Просмотров 131Год назад
2023 Histio Student Scholarship Reaction Video
"How I Diagnose Rosai-Dorfman Disease" with Dr. Ravindran and Dr. Rech
Просмотров 1,6 тыс.Год назад
"How I Diagnose Rosai-Dorfman Disease" with Dr. Ravindran and Dr. Rech
Rowe Drive
Boehm Place
Theo Estates
Schuppe Run
Well spoken, I am very proud of you and where you have come from. I wait with anticipation for what God has for you. Keep pushing and stay strong. I love you!❤
Jackson Michelle Allen Steven Smith Susan
503 Gislason Cove
Hartmann Place
Hernandez John Williams Linda Williams Jason
70083 Zboncak Dam
Jalon Circle
Sally Extension
Very good. Thank you so much. Bhalo thakben. Aditya Patra, Haridevpur, Tollygunge, Kolkata -82.India.
I'm from India I also have lch since 2016
no comments...
What if targeted therapies aren’t working and/ or hard to tolerate and rosai dorfman continue to progress, should chemotherapy like cladribine be a option?
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.
Thank you for this I don't really have anyone to talk about this with😢
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
Great work
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
How do i read the publication
Hi, you can read it here: www.ncbi.nlm.nih.gov/pmc/articles/PMC7614120/
This was very helpful as a patient.
I did a biopsy and the result says reactive hyperplasia, sinus histiocytosis pattern. What does that mean?
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.
Seriously rech !!
My son has recently been diagnosed with LCH neruodegeneration after completing 3 years of chemo for orbital and temple bone had 6 months clear until this February the LCH ND diagnosis.
Sir please share ph no my son single site lch diagnos last year share same information
My son has recently been diagnosed with LCH neruodegeneration after completing 3 years of chemo for orbital and temple bone had 6 months clear until this February the LCH ND diagnosis.
😢 First of all thanks for the information and research. I have a son named Julian who has this condition, he is 10 years old, my feeling is strange, thinking that 9 years ago this could have taken a different turn. Thank you for your help always!❤
*Promosm* ✋
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?
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!
Congrats Adi - so well deserved!!!! Thanks to the supporters of HA for the opportunity this gives Adi and the group to help future patients with this devastating condition. And thanks to Deanna and co for their tireless work to support present an future patients suffering from histiocytoses!
Have you ever seen a person with congenital DI? Where the mother developed gestational DI and the child was born with the disorder?
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!
My son has Rosai Dorfman. Is this condition included for the trial?
This trial is Langerhans cell based, and RDD does fall into that. So yes, they should be able to enroll him.
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 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
Muy, muy bien explicado. ¡¡¡Muchas gracias!!!❤
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.
Bone pain is a
Thank you!❤
Muchas gracias.❤
Mi niño despues de ser diagnosticado fallecio 3 dias despues, solo tenia 5 años 😭
We're so sorry to hear that. That's devastating. How long ago did that happen?
Anna-Your personal strength, breadth of knowledge, and balanced, encouraging messages fill me with wonder. Thank you for sharing your experiences and insights with all of us!
Anna, you are wise beyond your years! Thank you for sharing your story. I am a friend of Judy Hubert's. God Bless you. Wishing you all the best. Lisa Gurule
Anna - you are truly a warrior and such a great person! The positive mindset you have about this and also the informative stuff in this video about what you are going through is fantastic. I wish you nothing but the best and I hope you have a long and fantastic life! --Mr. Rafferty
Thank you so much for sharing this with us, Anna! I am SO proud of you! Watching you grow into such an incredible woman, despite everything that life has thrown at you, has truly been an honor. You have proven time and time again that you are a warrior. I truly admire that you have stayed so positive and focused on your goals and your future throughout all of this. On behalf of all of your old teachers I just want to say YOU ARE AMAZING and WE ARE PROUD OF YOU!!
How can I get my granddaughter to receive a scholarship . She lost her Mom my daughter Christina 45,from HLH July 26,2022. NoDad to help her financially. Please she is in the Medical Academy in a Jupiter. Needs all financial aid she could receive. Her name is MADELYN ROSE DeLong .
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/
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 🤲🏾🙏🏾
I now know 3 people who died of HLH. Ages 60, 26, and 4. Before these people I had never heard of this.
Mi hijo ya tiene 3 años de tratamiento y ya está en la última línea 😢
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.
My son Has got Histiocyosis But I don,t no What can I do Idont have Mony For my Son
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