Thank you for this, great explanation. My 20 year old daughter is a survivor of secondary HLH. She became critically ill and ended up in ICU with multi organ failure. She is now in remission 1 year later. We need to spread awareness of this devastating disease
I believe we are very lucky to still have her. She was sick for a week before the correct diagnosis was made. Having said that, we are very grateful to the medical professionals that finally diagnosed and successfully treated her. We are in Australia, so HLH in adults is very rarely diagnosed
I hope she's doing well. I, myself is survivor of secondary HLH. I was in ICU for more than a month. It's still a struggle. But I am doing well. I was 21 yrs old when I had it, I'm now 24.
i am 13 years old and got diagnosed with primary hlh a month ago . i was having 106 fevers for like 7 days straight . i was put on many medications and a hypo ventilator. i was in the icu for 5 days. i was very sick and in the hospital for 2 months. i had to get put on a lot of steroids to be able to come home and feel better . steroids suck. i have my bone marrow transplant and chemotherapy next month. wish me lucky with my recovery !
Thank you very much Dr Eric Strong. I am always very exciting that your new video coming out. I am very grateful that you take time of your busy schedule to educate us.
Secondary can have a single mutation on a known fHLH gene. Also, if a relapse of HLH is caught very early, a diagnosis of MAS will be given without a known underlying condition when pt doesn’t meet HLH diagnostic criteria.
My son died of HLH on 20th april 2021 aged 28. He had never had an illness in his life but from being admitted to hospital he died 3 weeks later. Please make people aware of this cruel disease please.
My 26 year old son died of HLH on May 9, 2021 after being in the hospital less than 2 weeks. Steve Kay, this is a cruel disease that I had never even heard of and still don’t totally understand. That’s why I searched You Tube. We are devastated. He went to the ER with a fever, thinking he’d be treated and sent home. It took almost a week to get the diagnosis. We are still in shock. I am so sorry for your loss.
My cousin was died from Lhl because of late diagnosis. He was suffer from continue high fever then follow by Heptomegaly splenomegaly and acute lung injury. He was on dexamethasone etoposide cyclosporine treatment
I lost my brother in 2019 due to HLH, after dengue infection. He was just 13yrs old. We could not do anything he died in 10 days after the fever. He had multi organ failures at the end. But our doctor had not told anything about bone marrow transplant, I don't know, why?
I'm so sorry for your loss. I can't speak about your specific situation, but bone marrow transplants are not available in all parts of the world. Also, patients need to be stable enough to survive the process of the transplant, which has a significant mortality rate in itself. BMTs also require some time to arrange and prepare for. If your brother died after only 10 days, it suggests he had a particularly aggressive and rapidly worsening case that would not have been amenable to BMT regardless of which hospital he was in. HLH is just a horrible disease.
@@manapriyuahya1544 I can't give specific, individualized medical advice, but *some* patients with HLH have an underlying genetic cause that would place family members at higher risk - this is predominantly seen in infants who get the disease (i.e. under the age of 2). The overwhelming majority of patients older than this do not have an identifiable genetic trigger. Genetic testing of family members exists, but is not available everywhere and is relatively expensive, so it may not be worth the cost given the relatively low probability it will find something - but I would speak to your own healthcare provider about what options for this might exist in your own healthcare system.
Then my parents always explained it wrong to me. Had the primary version as a baby. Still have pain everywhere from the chemotherapy, even though it's 21 years ago.
My mom just passed with HLH😢it’s basically body deterioration . The organs fail and causes sepsis and injures the lungs and then takes the person out , the doctors tried their best but this is basically similar to blood cancer, the immune system doesn’t work anymore
Thank you for this. My father has HLH fighting in hospital. He was brought to ER with diagnois of SEPSIS/UTI/HIGH FEVER/ doctors could not understand what was happening until ferratin checked. Has splenomegaly, high fever, confusion, low o2, gastric issues, kidney issues...diagnosed w EBV which triggered..possible prognosis after 10 day fever?
I so sorry to hear about your father. Unfortunately, I can't provide advice or offer information on prognosis that's more specific than what's in the video - there are just too many factors to consider. Prognosis needs to be made by his treating physicians who have access to all of the relevant data. Hoping for a rapid and complete recovery for him!
HLH is under the cytokine release (storm) syndrome umbrella. HLH has an established diagnostic criteria and treatment protocols where Cytokine Release Syndrome doesn’t have either.
I'm so sorry to hear about your children. Unfortunately, I can't offer specific, individualized medical advice here. I recommend speaking with your child's pediatrician about your concerns.
It's been reported, but appears to be a rare association: pubmed.ncbi.nlm.nih.gov/33389315/ Given the high degree of overlap in presentation between secondary HLH secondary to COVID and non-HLH COVID-triggered hyperinflammation, it's probably pretty hard to distinguish the two.
I'm sorry to hear about your family's experience. Unfortunately, I can't give specific, individualized medical advice here. However, I can say that HLH is *not* contagious.
@@EnglishMadeEasyWithSri No, HLH is not spread via saliva or intercourse. However, I would be sure we are talking about the same disease, hemophagocytic lymphohistiocytosis. HLH does not usually cause people to suddenly collapse and die, as implied in your initial comment. People with it are usually sick for weeks to months in the hospital before they either recover to die from the illness.
Thanks for bring this up! I wouldn't say HLH-94 was replaced, per se. HLH-2004 = HLH-94 + cyclosporine from the beginning instead of with an 8 week delay + intrathecal hydrocortisone. Unfortunately, when compared to HLH-94, HLH-2004 did not result in statistically better outcomes. As far as I can tell, the older protocol still appears to be the more common one used in practice. This 2019 position statement from the Histiocyte Society talks a little about it: www.cardiomedic.com.ar/Brochure/cytosorb-trabajos/16-2019-la-rosee-hlh-management-guidelines-blood.pdf I agree I could have been clearer about this in the video, but in my n=2 experience of taking care of HLH patients, I found hematologists colloquially referred to the protocol as "HLH-94" irrespective of cyclosporine timing.
@@StrongMed HLH-2004 is only useful as a precursor to a bone marrow transplant. Talk about CD52 rather than heavy chemo to prep for bone marrow transplant
Thank you for this, great explanation. My 20 year old daughter is a survivor of secondary HLH. She became critically ill and ended up in ICU with multi organ failure. She is now in remission 1 year later. We need to spread awareness of this devastating disease
I'm very glad to hear that she has done well! I agree that too many health care professionals are entirely unaware of the disease.
I believe we are very lucky to still have her. She was sick for a week before the correct diagnosis was made. Having said that, we are very grateful to the medical professionals that finally diagnosed and successfully treated her. We are in Australia, so HLH in adults is very rarely diagnosed
My daughter is currently fighting this she is 2 years old ty for this video
I need ur help my wife is diagnose with hlh ebv at 20 week pregnancy
I hope she's doing well. I, myself is survivor of secondary HLH. I was in ICU for more than a month. It's still a struggle. But I am doing well. I was 21 yrs old when I had it, I'm now 24.
i am 13 years old and got diagnosed with primary hlh a month ago . i was having 106 fevers for like 7 days straight . i was put on many medications and a hypo ventilator. i was in the icu for 5 days. i was very sick and in the hospital for 2 months. i had to get put on a lot of steroids to be able to come home and feel better . steroids suck. i have my bone marrow transplant and chemotherapy next month. wish me lucky with my recovery !
All the best my dear ❤❤
Thank you for bringing up this rare disease.
Thank you very much Dr Eric Strong. I am always very exciting that your new video coming out. I am very grateful that you take time of your busy schedule to educate us.
Adult HLH is a rare and almost universally fatal disease entity without treatment with published median survival of 1.8-2.2 months.👍
Thanks Strong Medicine Team, You Made my Medical Career Easy.
Secondary can have a single mutation on a known fHLH gene. Also, if a relapse of HLH is caught very early, a diagnosis of MAS will be given without a known underlying condition when pt doesn’t meet HLH diagnostic criteria.
Ur voice and gestures are excellent
My son died of HLH on 20th april 2021 aged 28. He had never had an illness in his life but from being admitted to hospital he died 3 weeks later. Please make people aware of this cruel disease please.
I'm so sorry to read about your loss.
My 26 year old son died of HLH on May 9, 2021 after being in the hospital less than 2 weeks. Steve Kay, this is a cruel disease that I had never even heard of and still don’t totally understand. That’s why I searched You Tube. We are devastated. He went to the ER with a fever, thinking he’d be treated and sent home. It took almost a week to get the diagnosis. We are still in shock. I am so sorry for your loss.
Question, did he have the c19 jab?
@@cathyjanney8572 Hi Cathy, I know exactly the position you're in. May he rest in wholeness. Just out of curiosity, did he get the CV19 jab?
@@ryanalexander3088 No, he had not had a single covid jab
very important with full knowledge..video..
I am oncology nurse, thank you for the explanation.
My cousin was died from Lhl because of late diagnosis. He was suffer from continue high fever then follow by Heptomegaly splenomegaly and acute lung injury. He was on dexamethasone etoposide cyclosporine treatment
bery informative .thank you
I lost my brother in 2019 due to HLH, after dengue infection.
He was just 13yrs old.
We could not do anything he died in 10 days after the fever.
He had multi organ failures at the end.
But our doctor had not told anything about bone marrow transplant,
I don't know, why?
I'm so sorry for your loss. I can't speak about your specific situation, but bone marrow transplants are not available in all parts of the world. Also, patients need to be stable enough to survive the process of the transplant, which has a significant mortality rate in itself. BMTs also require some time to arrange and prepare for. If your brother died after only 10 days, it suggests he had a particularly aggressive and rapidly worsening case that would not have been amenable to BMT regardless of which hospital he was in. HLH is just a horrible disease.
@@StrongMed
Thanks for the reply.
Wanted to know if my family members could have the same disease,
If yes what test are needed,
If you can answer.
@@manapriyuahya1544 I can't give specific, individualized medical advice, but *some* patients with HLH have an underlying genetic cause that would place family members at higher risk - this is predominantly seen in infants who get the disease (i.e. under the age of 2). The overwhelming majority of patients older than this do not have an identifiable genetic trigger. Genetic testing of family members exists, but is not available everywhere and is relatively expensive, so it may not be worth the cost given the relatively low probability it will find something - but I would speak to your own healthcare provider about what options for this might exist in your own healthcare system.
RIP RUMBLE JOHNSON
Bro chill we ain’t even know that is what got ‘em, I heard it was a mixture of things.
Excellent teaching skills❤️
Great lecture. Thanks!
great overview, much appreciated
my mom is 48 and was just diagnosed.with HLH as of today
Then my parents always explained it wrong to me. Had the primary version as a baby. Still have pain everywhere from the chemotherapy, even though it's 21 years ago.
thanks
My mom just passed with HLH😢it’s basically body deterioration . The organs fail and causes sepsis and injures the lungs and then takes the person out , the doctors tried their best but this is basically similar to blood cancer, the immune system doesn’t work anymore
Very helpful
Thank you for this. My father has HLH fighting in hospital. He was brought to ER with diagnois of SEPSIS/UTI/HIGH FEVER/ doctors could not understand what was happening until ferratin checked. Has splenomegaly, high fever, confusion, low o2, gastric issues, kidney issues...diagnosed w EBV which triggered..possible prognosis after 10 day fever?
I so sorry to hear about your father. Unfortunately, I can't provide advice or offer information on prognosis that's more specific than what's in the video - there are just too many factors to consider. Prognosis needs to be made by his treating physicians who have access to all of the relevant data. Hoping for a rapid and complete recovery for him!
I need an help from u..
Strong Medicine Channel !! Hooray!!
That was excellent 👏
Thank you
How painfull will it be for hlh patient....?????with multiple organ failure at the last 5 days???
I'm sorry, but every patient's experience is different. It's not possible to make a general statement about that.
Thank you 👍
thank you so much
Would you do a video on differentiating HLH from Cytokine Release Syndrome? Thanks
HLH is under the cytokine release (storm) syndrome umbrella. HLH has an established diagnostic criteria and treatment protocols where Cytokine Release Syndrome doesn’t have either.
Thank you!
Thank you for this not alot of good info on this disease
الرجاء الدعاء لاخي زين بالشفاء العاجل أن شاء الله عمره ٥شهور بالرعايه المركزة
Inshallah he will recover
كيفه الان
Awesome
appreciate for excellent presentation.
Now I had my 13yrs old daughter.. how many percent the chance that my daughter will not have this kind of rare disease?
I'm so sorry to hear about your children. Unfortunately, I can't offer specific, individualized medical advice here. I recommend speaking with your child's pediatrician about your concerns.
From Philippines...
It's too sad because my 2 babies had this HLH 😭 And they didn't survive 😭
so sorry
Doctor Can you make a Vedio about neck mass approach ?
Thankyou!
Can COVID-19 trigger HLH?
It's been reported, but appears to be a rare association: pubmed.ncbi.nlm.nih.gov/33389315/
Given the high degree of overlap in presentation between secondary HLH secondary to COVID and non-HLH COVID-triggered hyperinflammation, it's probably pretty hard to distinguish the two.
Or a better question, can the jab trigger it?!
My sister's husband collapsed due to this hlh...Is there a chance that it spreads to her???? someone please reply...we are so affected by his death...
I'm sorry to hear about your family's experience. Unfortunately, I can't give specific, individualized medical advice here. However, I can say that HLH is *not* contagious.
@@EnglishMadeEasyWithSri No, HLH is not spread via saliva or intercourse. However, I would be sure we are talking about the same disease, hemophagocytic lymphohistiocytosis. HLH does not usually cause people to suddenly collapse and die, as implied in your initial comment. People with it are usually sick for weeks to months in the hospital before they either recover to die from the illness.
Noticed this was just published yesterday. The 94 protocol was replaced by the 2004 protocol.
Thanks for bring this up! I wouldn't say HLH-94 was replaced, per se. HLH-2004 = HLH-94 + cyclosporine from the beginning instead of with an 8 week delay + intrathecal hydrocortisone. Unfortunately, when compared to HLH-94, HLH-2004 did not result in statistically better outcomes. As far as I can tell, the older protocol still appears to be the more common one used in practice. This 2019 position statement from the Histiocyte Society talks a little about it: www.cardiomedic.com.ar/Brochure/cytosorb-trabajos/16-2019-la-rosee-hlh-management-guidelines-blood.pdf
I agree I could have been clearer about this in the video, but in my n=2 experience of taking care of HLH patients, I found hematologists colloquially referred to the protocol as "HLH-94" irrespective of cyclosporine timing.
@@StrongMed HLH-2004 is only useful as a precursor to a bone marrow transplant. Talk about CD52 rather than heavy chemo to prep for bone marrow transplant
Wat actually is IVIg? Is it anti -A antibody or which antibody?
ivig stands for Intravenous inmunoglobulin
@@alvaro37nf think the combined immune system isolated from 6000 blood donors
رد
amazing♥️❤️☕🤝
it had maxs
يرجي الترجمة إلى العربية
Very helpful
Thanks