My mom just passed away from type 1 HLH with ALF or Acute Liver Failure ... 2 days ago. It was the most violent painful passing the DRs said they have seen. Every nerve and organ in her body was emitting massive amounts of pain....SOOO MUCH SO that she screamed and screamed and cried for days to make it go away and no amount of morphine could even dim the pain. It made its way into EVERY part of her body nerves and organs and her body rejected all treatments. She was only 60 years old and very healthy. She couldn't even recognize any of her family. We are now all trying to find out if there are tests that can be done on all her grandbabies to see if anyone may have it in them or carriers . just to kind of keep a paper trail and make it known and put it up front on all their medical records that this hideous monster of a disease IS IN THEIR family bloodline and to ALWAYS focus on this first when one of the children come in with some symptom or illness. The Drs at the University hospital said that what my mom had was a VERY rare case and they only knew of 2 others in the State she lived in that currebtly had it ...that's 3 people out of nearly 10 million . But i still want my family to be watched. After what mom went thru i never ever want another family member to go thru that kind of passing ...especially a child pleading for a parent to make the pain stop and there is absolutely NOTHING you can do but let it run it course..... This damn disease is horrifying!!! There are no words to describe what it will do to the human body and how it will take you down. NONE !! I am a military Veteran and i HAVE seen pain and suffering BUT NOTHING NOTHING like this and i pray so hard and God willing it will never show its face in my family again !! I wish there was a cure for this like a vaccination when we are born to end this monster....anyway that's my story and how i ended up here...great video very informative. I will be showing this video as well as my brothers and sister and their children to our family DRs.
Hey Doc! Have you tried or considered using the human endocannibinoid system to help homeostatic auto immune regulation? My father has been diagnosed with no known trigger. Chemo is not working long term and we're planning a bone marrow transplant soon. I'm wondering if you can please put a small amount of your time toward investigation of the cannabis plant to help people who are suffering. I understand using cannabis on children is seriously taboo, I believe there must be adults who are willing to try alternative therapy in addition to their regular treatments. Please help us out doc, keep up your work! You're an angel!
I would to know more on Macrophage Activation Syndrome! It gets mentioned but I can't find any videos and such on it but all I truly know is that it is related to HLH.
I'm 17 with secondary HLH... I'm terribly sorry for your loss but just know that you're son is always watching over you.... I'm sorry if this upsets you and I understand that it may.... but I do believe in spirits and he will watch over you for the rest of your life.... again I'm sorry for your loss and I'm sorry if this made you upset... if you want me to I would be more then happy to delete this post
bainun Ct wow....my heart goes out to you...my grandson was diagnosed with HLH and nothing they have done is working....including bone marrow transplant ....he was also born with Down syndrome ....he’s only a year old....the doctors have told us they have done all they could do.....Within the last week he has pneumonia now...God bless and touch both of these children....your son and my grandson
My 9 month old daughter was diagnosed with HLH on first day of edmitence to hospital. We refused treatment and demander second opinion from different doctors, 3 days later we found that my daughter had no’s such thing and doctors give false diagnoses. It was simple pneumonia, Mononucleosis. My daughter emediatly respondet to treatment and now %100 well
Survivor of MAS which is basically the same thing, my chances were low. Took 3-4 months to return to my normal lifestyle, but im here.
I now know 3 people who died of HLH. Ages 60, 26, and 4. Before these people I had never heard of this.
My mom just passed away from type 1 HLH with ALF or Acute Liver Failure ... 2 days ago. It was the most violent painful passing the DRs said they have seen. Every nerve and organ in her body was emitting massive amounts of pain....SOOO MUCH SO that she screamed and screamed and cried for days to make it go away and no amount of morphine could even dim the pain. It made its way into EVERY part of her body nerves and organs and her body rejected all treatments. She was only 60 years old and very healthy. She couldn't even recognize any of her family. We are now all trying to find out if there are tests that can be done on all her grandbabies to see if anyone may have it in them or carriers . just to kind of keep a paper trail and make it known and put it up front on all their medical records that this hideous monster of a disease IS IN THEIR family bloodline and to ALWAYS focus on this first when one of the children come in with some symptom or illness. The Drs at the University hospital said that what my mom had was a VERY rare case and they only knew of 2 others in the State she lived in that currebtly had it ...that's 3 people out of nearly 10 million . But i still want my family to be watched. After what mom went thru i never ever want another family member to go thru that kind of passing ...especially a child pleading for a parent to make the pain stop and there is absolutely NOTHING you can do but let it run it course..... This damn disease is horrifying!!! There are no words to describe what it will do to the human body and how it will take you down. NONE !! I am a military Veteran and i HAVE seen pain and suffering BUT NOTHING NOTHING like this and i pray so hard and God willing it will never show its face in my family again !! I wish there was a cure for this like a vaccination when we are born to end this monster....anyway that's my story and how i ended up here...great video very informative. I will be showing this video as well as my brothers and sister and their children to our family DRs.
So sorry about your mom. I hope and your family are safe.
Hey Doc! Have you tried or considered using the human endocannibinoid system to help homeostatic auto immune regulation?
My father has been diagnosed with no known trigger. Chemo is not working long term and we're planning a bone marrow transplant soon. I'm wondering if you can please put a small amount of your time toward investigation of the cannabis plant to help people who are suffering. I understand using cannabis on children is seriously taboo, I believe there must be adults who are willing to try alternative therapy in addition to their regular treatments.
Please help us out doc, keep up your work! You're an angel!
Thank you
I would to know more on Macrophage Activation Syndrome! It gets mentioned but I can't find any videos and such on it but all I truly know is that it is related to HLH.
Huge information
Everyone can. My son died from secondary HLH at age 7 in 2009. It started as rheumatoid arthritis when he was 4.
I'm 17 with secondary HLH... I'm terribly sorry for your loss but just know that you're son is always watching over you.... I'm sorry if this upsets you and I understand that it may.... but I do believe in spirits and he will watch over you for the rest of your life.... again I'm sorry for your loss and I'm sorry if this made you upset... if you want me to I would be more then happy to delete this post
same my son now
my son HLH too,find to weeks ago.her body not respond to medication and chemo..doctor cannot do anything..so sad..may god bless u son
bainun Ct wow....my heart goes out to you...my grandson was diagnosed with HLH and nothing they have done is working....including bone marrow transplant ....he was also born with Down syndrome ....he’s only a year old....the doctors have told us they have done all they could do.....Within the last week he has pneumonia now...God bless and touch both of these children....your son and my grandson
My 9 month old daughter was diagnosed with HLH on first day of edmitence to hospital. We refused treatment and demander second opinion from different doctors, 3 days later we found that my daughter had no’s such thing and doctors give false diagnoses. It was simple pneumonia, Mononucleosis. My daughter emediatly respondet to treatment and now %100 well
I love your video. Just was told have Rossi Dorfman diesease. Would love more insight regarding any cure and what to do next
histio.org/page.aspx?pid=399 Good information about Rosai Dorfman Disease.