Abstract
Paroxysmal nocturnal hemoglobinuria (PNH) is a rare hematological disorder caused by uncontrolled terminal complement activation of blood cells. It is associated with intravascular hemolysis, thromboembolic events, organ damage, impaired quality of life and premature mortality. As there are no PNH registry data from Middle Eastern countries, little is known about its management in the region. This narrative review summarizes available data on the prevalence, characteristics, diagnosis and treatment of PNH in Middle Eastern populations of Arabic origin. A search of PubMed and EMBASE from inception to 31 May 2025 identified 15 relevant publications: five from Saudi Arabia, four from Iran, two from Kuwait, one each from Egypt, Oman, Lebanon, and one reporting a Middle Eastern patient treated in Germany. The estimated incidence rate of PNH in an Omani cohort was 1.9 per 5 million population. Mean and median ages at PNH diagnosis were 38 years (Iranian retrospective review, n = 81) and 22.5 years (Omani case series, n = 10), respectively. Where reported, anemia and fatigue were common presenting symptoms. Few publications reported on treatment with C5 inhibitors, although available data indicate that eculizumab generally improves patients' clinical condition. Uptake and clinical use of ravulizumab in the Middle East remains undocumented. Subject to limitations of the available data, the management approach to PNH in the Middle East appears to be generally consistent with that reported in other regions. However, additional data are required to gain greater insight into the status of PNH and its management in Middle Eastern populations.