As we work our way through this, Michelle and I have given a lot of thought to how we might be of help to future families facing an HLH or similar diagnosis. We have not yet figured that part out. At this point it’s all we can do to manage this blog, which I hope will be of some use, and help our girls get through this. Hopefully we’ll see the tunnel’s end soon and can figure our where we can be of use.
One parent who is giving back and working for HLH awareness already is Michelle Schulze, who has created Liam’s Lighthouse Foundation. Liam’s Lighthouse Foundation seeks to promote awareness of HLH, a disease that is far to poorly known among the pediatricians who have to diagnose it.
Without a quick diagnosis, HLH does enough damage that, even if caught eventually, can prevent a child from recovering. It is also what is known as an “orphan” disease, which means it affects few enough people per year that it escapes wide notice and, importantly, proper research.
Increasingly it seems apparent that HLH is not as rare as once believed, but because it goes undiagnosed or is diagnosed too late in many cases, it seems impossibly rare. HLH is fatal in 2 months or less if untreated, so it’s imperative that pediatricians become aware of the signs and symptoms to be sure patients get into the hospital for treatment quickly.