Quick Summary
HHT is an inherited blood vessel condition with nosebleeds and AVMs in organs like lungs, brain, and liver. Longitudinal tracking of bleeds, iron status, procedures, and imaging helps prevent complications.
What is HHT
HHT, also called Osler-Weber-Rendu, is an inherited condition that leads to telangiectasias on the skin and mucosa and AVMs in organs. Screening and monitoring help catch problems early. See Cure HHT and the NIH GARD overview.
Why a longitudinal view helps
- Bleed tracking: frequency, duration, severity, and treatments for nosebleeds
- Iron and transfusions: hemoglobin, ferritin, infusions, and tolerance
- AVM surveillance: lungs, brain, liver, and GI with imaging and procedures
- Family screening: store genetics and share guidance for relatives
How Aether supports HHT care
- Logs bleeding episodes with timestamps and triggers
- Tracks labs and iron therapies over time
- Centralizes imaging reports and procedure notes for embolization or surgery
- Simple sharing links for ENT, interventional radiology, and hematology teams