Fact 10: Unveiling the Global Impact of HLH
While precise global prevalence and incidence rates of HLH remain elusive due to under-diagnosis and reporting inconsistencies, studies suggest that HLH is not as rare as previously believed. The disease can affect individuals of any age group, but primary HLH typically manifests during infancy or early childhood.
HLH is not limited by geographical boundaries. While certain genetic mutations linked with HLH have been found to be more prevalent in certain populations, the disease itself is global in nature. Cases of HLH have been reported worldwide, spanning various races, ethnicities, and geographical locations.
HLH, particularly if undiagnosed or untreated, can be life-threatening. It can significantly impact patients’ quality of life, necessitating prolonged hospitalizations and intensive treatments. Moreover, HLH also carries a significant psychological and emotional toll for patients and their families, further underscoring its global impact.
The economic burden of HLH is significant. The costs of diagnostic tests, treatments including hospitalizations, potential stem cell transplants, and long-term follow-up care, can be substantial. Added to this are indirect costs, such as loss of work for patients and caregivers, which further exacerbate the economic impact.(10)
