Issue | Example quote |
---|---|
Symptom recognition | “Our hematologist was pulling his hair out trying to figure out what was happening, ‘We don’t know what it is’" |
Incorrect diagnosis | “The first seven days that we were in the hospital, the doctors still didn’t know what was happening, they thought he just had a bad virus” |
Transfer between HCPs | “I requested for him to be transported to [hospital name] and they did. And still, there was like very—a lot of confusion, not knowing what was going on” |
Delays leading to severe progression of HLH | “Before he was diagnosed, they ran over 500 tests… I mean, back then, it was even more rare knowing—anybody knowing about this illness … We were so incredibly lucky that his hematologist that we got had just gotten out of his residency and [child with HLH] was very close to dying” |
Chance diagnosis | “We were lucky because one of the ER doctors had done a thesis on HLH” |