We lost our 43 year old brother yesterday from HLH. He collapsed on Friday, placed in induced coma. Life support switched off Sunday night as the disease was attacking his liver and kidneys to complete failure. May his soul rest in peace.
I was a teenager when I was diagnosed and it nearly killed me ,multiple organ failure,coma,muscle loss and all that…..to this day I still don’t feel the same after it
@@danielhernandez1904 Well I don’t really know exactly I had it and then I was treated just in time and for some reason It hasn’t come back since 4 years later I was just a lucky one maybe but who’s to say it won’t happen again decades later but yeah maybe a year or so
@deanwall7163 Glad to hear it hasn't come back. Do you take any medication for the hlh not to come back?. I've been on humira and it just seems to have some serious long term side effects. Thanks for replying back btw
@@danielhernandez1904 no I don’t I took a lot of stuff back then during and a few months after leaving the hospital but they try to ween you off them if they notice it isn’t coming back, very slowly though.Feel free to come here and tell me about what’s going on with your treatment glad to help, it’s hard to find people that had the same problems as me nice to hear from someone else.
My condolences 😔 It's tough not knowing much, it's like the pandemic effect all over again for you all. From what I understand it's an autoimmune response, it can't jump from one person to another unless if blood of the infected person has made its way into another host & even then if the new host has a strong immune system it just fights it just like any other foreign dangerous things entering the body. You can contact your infectious diseases office, they should know more.
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My son died of HLH on 20th of April 2021 , 3 weeks after being diagnosed with an ear infection, it is very rare and more awareness is needed.
We lost our 43 year old brother yesterday from HLH. He collapsed on Friday, placed in induced coma. Life support switched off Sunday night as the disease was attacking his liver and kidneys to complete failure. May his soul rest in peace.
I was a teenager when I was diagnosed and it nearly killed me ,multiple organ failure,coma,muscle loss and all that…..to this day I still don’t feel the same after it
Hello @deanwall7163. How long have you had it for?. I was diagnosed with hlh 2 years ago and hospitalized for over a month.
@@danielhernandez1904 Well I don’t really know exactly I had it and then I was treated just in time and for some reason It hasn’t come back since 4 years later I was just a lucky one maybe but who’s to say it won’t happen again decades later but yeah maybe a year or so
@deanwall7163 Glad to hear it hasn't come back. Do you take any medication for the hlh not to come back?. I've been on humira and it just seems to have some serious long term side effects. Thanks for replying back btw
@@danielhernandez1904 no I don’t I took a lot of stuff back then during and a few months after leaving the hospital but they try to ween you off them if they notice it isn’t coming back, very slowly though.Feel free to come here and tell me about what’s going on with your treatment glad to help, it’s hard to find people that had the same problems as me nice to hear from someone else.
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...
My condolences 😔 It's tough not knowing much, it's like the pandemic effect all over again for you all. From what I understand it's an autoimmune response, it can't jump from one person to another unless if blood of the infected person has made its way into another host & even then if the new host has a strong immune system it just fights it just like any other foreign dangerous things entering the body. You can contact your infectious diseases office, they should know more.
Your sister will be fine but if they had children it should be an important thing to check if they have it too
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