Do’s and Don’ts
The HHT WG has compiled factsheets with a list of essential do’s and don’ts. These guidelines are designed to help patients, families, and caregivers, and healthcare professionals make informed decisions about managing HHT, enhancing quality of life, and minimizing risks associated with certain aspects of this condition such as pregnancy, anaesthesia, brain abscesses, stroke, surgery.
This factsheet from the VASCERN Hereditary Haemorrhagic Telangiectasia (HHT) Working Group provides expert guidance for healthcare professionals managing pregnancy in HHT patients. Because HHT pregnancies are considered high-risk, the document outlines key recommendations for each stage—before, during, and after pregnancy—as well as during delivery. These include pre-pregnancy screenings for AVMs, anaemia management, careful monitoring of SaO₂ and dyspnea, safe anaesthesia practices, and postpartum follow-up care. The resource emphasizes tailored care and close collaboration with HHT reference centers to improve maternal and fetal outcomes.
While based on expert consensus and clinical experience, this document is not a substitute for personalised medical advice. Management should always be tailored to the individual, in consultation with appropriate medical specialists.
This factsheet, developed by the VASCERN Hereditary Hemorrhagic Telangiectasia (HHT) Working Group, offers expert guidance for patients with HHT planning to take long flights. It outlines key recommendations to ensure safety and comfort during air travel, including wearing thromboembolic deterrent stockings (TEDs), staying hydrated, continuing prescribed medications (especially anticoagulants), and regularly moving around the cabin. It also emphasizes the importance of nasal care and being prepared to manage nosebleeds during flights.
While based on expert consensus and clinical experience, this document is not a substitute for personalised medical advice. Management should always be tailored to the individual, in consultation with appropriate medical specialists.
This patient-centred factsheet, developed by the VASCERN Hereditary Hemorrhagic Telangiectasia (HHT) Working Group, outlines expert-recommended steps for managing epistaxis (nosebleeds). It provides clear do’s and don’ts for handling acute and persistent nosebleeds, emphasizing correct posture, applying pressure, and avoiding harmful practices such as tilting the head back or swallowing blood. The guide also includes preventive measures like using nasal lubricants and humidifying dry air.
While based on expert consensus and clinical experience, this document is not a substitute for personalised medical advice. Management should always be tailored to the individual, in consultation with appropriate medical specialists.