You do not need every answer today. You just need a place to start.
A new HHT diagnosis can bring relief, worry, and a long list of questions—sometimes all at once. You do not have to work through them in order, and you do not have to work through them today. Start with the step that matters most to you, and come back for the rest.
Six steps, in the order they usually matter
What to do after an HHT diagnosis
A diagnosis is not the bad news. It is the point at which the things HHT can do quietly become things that can be looked for, watched, and treated. Here is the order most people find useful.
1
Understand what HHT means
Hereditary hemorrhagic telangiectasia (HHT) changes how blood vessels form, which is why it causes bleeding rather than clotting problems. You do not need the whole picture before you take the next step.
2
Complete recommended screening
This is the most time-sensitive step. Malformations in the lungs and brain often cause no symptoms at all, and screening is how they are found before they cause harm. The International HHT Guidelines set out what to screen for and when.
3
Connect with expert HHT care
HHT can involve the lungs, brain, liver, gastrointestinal tract, blood, and nose. An HHT Center of Excellence brings those specialists around one patient instead of asking you to coordinate them yourself.
4
Think about your family
HHT is inherited, and each child of an affected parent has a 50% chance of having it. Once a family’s genetic change is known, relatives can be tested for that specific change—which means some of them can stop wondering.
5
Build your everyday care toolkit
The practical layer: the comprehensive guide to managing HHT, care checklists to bring to appointments, an emergency wallet card, and the Nosebleed Severity Score for tracking whether a treatment is working.
6
Stay connected, when you are ready
There is no deadline on this one. Webinars, patient conferences, community stories, and research participation are all here when you want them, and they keep until you do.
Before your first appointment
Go in with questions already written down
Appointments move quickly, and HHT covers a lot of ground. Writing questions down beforehand is the difference between leaving with answers and leaving with a list you meant to ask about.
It also helps to bring what you already know: which relatives have had nosebleeds or unexplained anemia, any imaging you have had, and how often your own nosebleeds happen. A family history is clinical information, even when it is secondhand.
Worth asking
Lungs
Have I been screened for a pulmonary AVM, and when should that be repeated?
Brain
Is brain imaging recommended for me, and what would we do with the result?
Iron
Should my iron and hemoglobin be checked regularly, and how often?
Family
Which of my relatives should be tested, and who can help me tell them?