There is no single way HHT shows up. There is no single way to treat it.
Depending on how the disease affects you, care may mean managing bleeding and anemia, screening for or treating malformations, and bringing several specialties into the same conversation. Most HHT treatment follows a stepped approach: start with the least invasive option that works, and escalate only when it stops working.
Care by manifestation
What treatment looks like, area by area
Your care plan depends on which parts of your body HHT has affected. These are the areas most often managed, and what the current International HHT Guidelines point toward for each.
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Nosebleeds
Treatment starts with keeping the nasal lining moist, usually saline spray or gel twice daily. When that is not enough, options step up through medication, then in-office procedures such as laser or sclerotherapy, and for severe bleeding, systemic therapy or surgery.
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Iron deficiency and anemia
Guidelines recommend testing every adult with HHT for iron deficiency, whether or not they feel unwell. Treatment usually begins with oral iron and moves to intravenous iron when that is not keeping up. Transfusion is held for specific situations rather than used routinely.
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Lung AVMs
Pulmonary AVMs are treatable, most often by embolization, a catheter procedure that closes the abnormal connection from inside the vessel. This is one of the clearest arguments for screening: a treatable problem that is often misdiagnosed as another common condition.
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Brain VMs
Most brain vascular malformations never bleed. When one is found, the decision about whether to treat it, and how, belongs with a specialist team weighing the specific lesion against the risks of intervening.
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Liver VMs
Liver malformations are common and usually cause no trouble. Some lead to heart or liver strain, and those cases need specialist management. The Guidelines carry important cautions here, including about procedures that are appropriate elsewhere in the body.
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Gastrointestinal bleeding
Bleeding from telangiectases in the stomach or intestines is often invisible, showing up first as iron deficiency. Management combines keeping iron replaced with targeted treatment when bleeding is significant.
MISINFORMATION
Two things people are often told wrongly
People with HHT sometimes also need anticoagulant or antiplatelet therapy for an unrelated condition. Having HHT is not an absolute reason to withhold it. The Guidelines state that these treatments can be used when they are medically indicated, with preferences about which agents to choose and a caution against combining two of them unnecessarily.
The second is the idea that nosebleeds are simply something to live with. Severity can be measured, tracked with the Nosebleed Severity Score, and used to judge whether a treatment is actually working—which turns a vague complaint into something a clinician can act on.
The stepped approach to nosebleeds
First
Moisturize the nasal lining, typically saline spray or gel twice daily
Next
Medication that helps clots hold rather than breaking down early
Then
In-office procedures such as laser, radiofrequency, or sclerotherapy
Severe
Systemic antiangiogenic therapy, or surgery for life-threatening bleeding