Hemophagocytic Lymphohistiocytosis (HLH)

A lovely 18yr old young lady in my family has just been diagnosed with this awful disease and I made the mistake of googling for information. Does anyone have anything to say to give me hope please.

Re: Hemophagocytic Lymphohistiocytosis (HLH)

have you read any literature on it EZ? it may help to search for information if you really want to know more about it, sorry I can't comment as it's beyond my scope but in the past I've prayed to God and things have worked out, I'm not religious but I do believe in Him xx

Re: Hemophagocytic Lymphohistiocytosis (HLH)

Hi Honey. Thank you for your comments. Yes there have been a good many prayers but not from me. There is much info online but very little gives much hope. She is having Chemo therapy currently.

Re: Hemophagocytic Lymphohistiocytosis (HLH)

not heard of the illness before ,but it says its a rare illness .i would look for a support group, sometimes when we google an illness we get mostly the negatives bad news ,,

Re: Hemophagocytic Lymphohistiocytosis (HLH)

you need to think positive EZ and talk about it whether to family or friends, believe me it helps

Re: Hemophagocytic Lymphohistiocytosis (HLH)

We are a very large and very close family and always rally round on such occasions but this has really knocked us sideways.

Re: Hemophagocytic Lymphohistiocytosis (HLH)

of course it has and it's to be expected but you WILL gain strength by sticking together and sharing your feelings

Re: Hemophagocytic Lymphohistiocytosis (HLH)

This web page an HLH question popped up in my google search that sends new reports on HLH to my email. My husband was diagnosed at 27 in 2012 and is a survivor. www.ericsjourney.org ---Though it remains serious , much of the info online is skewed. In short it's a blood disease similar to leukemia that's treated with steroids chemotherapy and bone marrow transplants depending on it's activity and each patient differs.

I am also a board member for Liam's Ligthouse Foundation. I only created an account to reply to you. Please email me at amanda@liamslighthousefoundation.org for more information and resources to pass onto the family if they haven't found them already.

Thanks
Amanda

Re: Hemophagocytic Lymphohistiocytosis (HLH)

Just read about it, I've never heard of it! Hope everything goes well & the treatment works, it said chemo and possibly bone marrow transplant, I wonder if they have a stem-cell treatment. There's something new being developed all the time. x

Re: Hemophagocytic Lymphohistiocytosis (HLH)

Hi Amanda. Many thanks for contacting me. I will pass on your info to the parents. I know they have already been in contact with an online help and advice organisation. It may even be the one you mention. Thank you so much.