NMMR: HLH (Hemophagocytic lymphohistiocytosis)

[alleinesein]

Asking on here since this board tends to be the most active.

A friend's daughter was just diagnosed with Hemophagocytic lymphohistiocytosis (HLH) today.

Anyone know of this disease or has had any experience with it?

Everything that I have read so far is fairly depressing and it pretty much indicates that this disease is fatal.

[kelbellefl]

saw your post earlier. There are so many positive outcomes to share with you. Please visit the HLH Family group on Facebook . . . www.facebook.com/groups/HLHSurvivors/


if you can't get there for some reason, reach out to me via a private message on FB and I'll send you the link. My daughter is a survivor, but getting it diagnosed quickly, then going to the HLH experts to start the proper treatment is key. We can help.

Kelly Claudine Marsh
Mom to Hannah Marsh, HLH Survivor