09/02/2026
💙 DAY 2 — THE KEY TO AWARENESS IS EDUCATION
Thank you to everyone who shared the names of your warriors and angels with us yesterday. 💙
Every name shared represents a person, a family, a story—and a reason we keep shining a light on Histiocytosis.
Today, we turn that light toward EDUCATION.
🔎 WHAT EVERYONE SHOULD KNOW ABOUT HLH
Hemophagocytic Lymphohistiocytosis (HLH) is a rare, life-threatening disorder in which the immune system becomes dangerously overactive, causing uncontrolled inflammation that can damage organs.
**HLH can happen at ANY age.
It can be genetic (primary/familial) or develop secondary to conditions such as infections, rheumatologic diseases or cancers.
**HLH is rare.
Cincinnati Children's reports that HLH occurs in approximately 1 in 50,000 children. Because it is so uncommon, many healthcare providers may have limited experience recognizing it.
**Symptoms can be difficult to recognize.
They may include persistent or recurrent fever, enlarged spleen or liver, low blood counts, liver abnormalities, neurologic symptoms and other signs of severe inflammation.
**Early recognition matters.
HLH can progress rapidly, and Cincinnati Children's emphasizes that an accurate and timely diagnosis is essential. Specialized testing—including genetic and other advanced laboratory testing—can help physicians evaluate suspected HLH.
🩵 KNOWLEDGE CAN CHANGE A STORY.
If you or someone you love is experiencing unexplained, persistent or severe symptoms, share information about HLH with your healthcare team.
Ask questions.
Keep records.
Advocate.
And when appropriate, ask whether consultation with an HLH specialist or Center of Excellence may be beneficial.
This post is not a diagnostic tool or substitute for medical care—it is a starting point for conversation and awareness.
📚 SAVE THESE RESOURCES & SHARE THEM
Cincinnati Children's — HLH Center of Excellence
Expert information for families AND healthcare professionals, including diagnostic information and resources for physicians.
Cincinnati Children's Hospital
https://www.cincinnatichildrens.org
INTO-HLH Registry
A collaborative registry led by Cincinnati Children's that is working to better understand HLH, its treatment, complications and outcomes. Patients and families—including those who have lost a loved one—can learn about participation.
https://hlhregistry.org/
Liam's Lighthouse Foundation
Our mission is to provide education and awareness about HLH and histiocytic disorders, connect families with resources, and support research toward better treatments and a cure.
https://www.liamslighthousefoundation.org
💙 HELP US SHINE THE LIGHT.
Did you know what HLH was before it touched your family?
Tell us in the comments:
1️⃣ Yes — I knew about HLH
2️⃣ No — I learned because of my own journey
3️⃣ I learned because of someone I love
4️⃣ I'm a healthcare professional learning more
And please SHARE this post.
You never know whose doctor, nurse, parent, caregiver or loved one may see it.
One share could lead to one more person knowing HLH exists.
One more person asking the right question.
One more family finding answers sooner.
💙 Awareness begins with education.
Education creates advocates.
Advocates create change.
For our warriors. For our angels. For every family still fighting.
