ASH Impact Series: Nancy Berliner, MD - Properly Identifying & Treating Cases of HLH in Adults

Nancy Berliner, MD, discusses Hemophagocytic Lymphohistiocytosis (HLH) in adults. Dr. Berliner moderated a session on HLH in adults at the 2015 ASH Annual Meeting. Visit ashondemand.org/ for more on this topic and to view other educational videos from ASH.

[@stevekay5486]

My son died of HLH on 20th april 2021 after being in hospital for 3 weeks aged 28. He never had an illness in his life but his life was cut short by HLH. Please raise awareness of this disease and fund research as best you can , thank you.

[@shelleycharlesworth5177]

My husband was 74 9+ years ago when he died from HLH. He had been healthy all his life. He got a cold & cough Jan 21 2014. Cold and cough went away in 8 days but he did not regain energy or appetite. I took him to urgent care Feb 4 . Xray showed lungs clear but blood work was off so he was hospitalized and bone marrow biopsy showed Lymphoma AND HLH. That was feb 14. Chemo was begun. He took 4 treatments and developed a lung infection. He died March 27th 2014 after suffering terribly. My world collapsed and will never be the same. We were married 39 years when he died. I had never heard of HLH and doctors told me they see 1 case a year in that hospital and it's mostly in children under age 3. Mostly my husband had good care during his 39 day hospital stay. We were both shocked and terrified. He had been so healthy and we had never heard of this HLH. I will never be the same. He was my rock and I miss him more than ever- 9+ years of being without him sucks.

[@IceFear266]

My grandma, aged 76, died in almost exactly the same circumstances this year. Fever and cold, we all thought it was the flu, doc did some bloodwork but it came out looking off so he did it again, still off. We took her to the ER, the doctors did bone marrow biopsy and it showed HLH. They could only give her steroids because her body was too weak for any other treatment. She died of a cardiac arrest on Jan 16 this year. When we asked for why this might have happened, the doctors said that its so rare among adults that there isn't enough research about it. All they could do was try, but at her age, they informed us very early on to keep our expectations low. God bless her soul, she's in a better place. Your husband is in a better place too. I hope you're doing well and all the best wishes to you and your family

[@shelleycharlesworth5177]

Thank-you. Sorry for the loss of your grandma. It was such a sudden shock for me as my husband had been so healthy. It's been 10 years and I have managed to go but nothing is the same without my beloved partner of 40 years. @@IceFear266

[@k.a7095]

I am from Ethiopia and the doctors here recently diagnosed my uncle with HLH. They put him on steroid and his liver function test becomes normal. His WBC was low, but after the steroid it becomes normal. My concern is, HLH is very rare and we don't know how common it is in Ethiopia. Do you think HLH is tge right diagnosis ?

[@tlperdue99]

Does the H2O2 plus O3 protocol viable for adult HLH?

[@kathaykat8605]

any cases of pregnant women with HLH?

[@amandamajusiak8572]

yes, there are several. you can ind a link to the facebook support group where many of them are at hlhsupport.org

[@amandajones7632]

My mother is in the hospital right now with HLH she’s 67. She only developed this 2 months ago. How do we stop it? If chemo and dexamethasone don’t work.

[@sampatk4948]

How's your mother doing now ?

[@amandajones7632]

Sadly she passed since I posted this. I took her in less than a months time.

[@user-yv2qt9cr2s]

i ma so sorry for your loss.