BREAKING: New findings reveal that patients with hereditary hemorrhagic telangiectasia (HHT) experience far more severe complications than previously understood. This urgent analysis was presented by Hanny Al-Samkari, MD, at the 67th American Society of Hematology (ASH) Annual Meeting in Orlando, Florida, raising serious concerns for healthcare providers and patients alike.
The latest data from the Comprehensive HHT Outcomes Registry of the United States (CHORUS) indicates that HHT, the second most common inherited bleeding disorder, leads to frequent and critical complications. With over 600 participants involved in the study from November 2023 to April 2025, the implications of these findings are staggering.
URGENT INSIGHT: HHT is characterized by malformed blood vessels that can cause devastating bleeding complications. While the disorder is often underrecognized, particularly in younger patients, the data show that 568 patients (95%) experienced recurrent spontaneous epistaxis, with 339 (60%) suffering this before the age of 13. Alarmingly, 454 patients (76%) reported moderate-to-severe HHT-associated mucocutaneous bleeding, necessitating emergency interventions.
Dr. Al-Samkari emphasized the critical nature of these findings, stating,
“Intracranial hemorrhages in HHT typically occur before age 25, and the average age of diagnosis was about 37 years. This significant diagnostic delay is very concerning.”
The study highlights that serious complications are alarmingly common, with 128 patients (21%) experiencing serious manifestations and 241 (40%) requiring emergency room visits or hospital admissions due to HHT-related issues.
The impact of HHT extends beyond just bleeding. The study revealed that 68% of participants were diagnosed with anemia, with many requiring intravenous iron or blood transfusions. Additionally, life-threatening conditions such as heart failure and pulmonary hypertension affected 41 and 44 patients, respectively.
WHAT’S NEXT: As HHT remains largely unaddressed in the medical community, Dr. Al-Samkari calls for immediate action to recognize and treat this disorder more effectively. The absence of approved therapies poses an urgent challenge for healthcare providers, and the need for awareness is paramount.
Patients and families affected by HHT should consult healthcare professionals for proper diagnosis and management options, particularly as the risks for severe complications are now more evident than ever. This groundbreaking research underscores the necessity for increased education and proactive measures in addressing HHT.
Stay tuned for more updates as this story develops. This critical information could save lives and alter the course of treatment for thousands suffering from HHT.
