Building Your HHT Care Team

Because HHT affects multiple organ systems simultaneously, a single doctor—no matter how talented—cannot manage it alone ^[1][2]. To stay healthy and safe, you need a “medical home” where a group of specialists works together to coordinate your care ^[3][4].

The Essential HHT Team

An effective HHT care team is typically made up of specialists who each focus on one piece of the HHT puzzle:

• Otolaryngologist (ENT): Focuses on managing chronic nosebleeds and the health of your nasal lining ^[5][6].
• Interventional Radiologist (IR): The specialist who performs embolization procedures to block off abnormal vessels in the lungs, brain, or liver ^[5][7].
• Pulmonologist: Manages the health of your lungs and monitors for complications related to oxygen levels and shunting ^[1][3].
• Hematologist: Focuses on treating iron deficiency and anemia, often through iron infusions or specialized medications ^[1][8].
• Geneticist / Genetic Counselor: Helps confirm your diagnosis through testing and maps out the screening needs for your relatives ^[2][9].
• Neurologist / Neurosurgeon: Screens for and manages AVMs in the brain ^[1][10].
• Gastroenterologist: Monitors for bleeding in the stomach or intestines and manages the risks associated with the SMAD4 mutation ^[1][11].

What is an HHT Center of Excellence?

An HHT Center of Excellence (CoE) is a specialized hospital or clinic that has been formally recognized for its expertise in treating HHT ^[3]. You can find a directory of these centers through the primary patient advocacy organization, Cure HHT ^[3]. Unlike a general practice, a CoE provides:

• Standardized Screening: They use the most current international protocols to find “silent” AVMs before they cause problems ^[3][5].
• Expert Coordination: A nurse coordinator typically manages all your appointments so that you can see multiple specialists in a single visit ^[3][1].
• Higher Experience Levels: The doctors at a CoE see hundreds of HHT patients every year, whereas a local doctor may only see one or two in their entire career ^[3][12].

Preparing for Your First Appointment

To make the most of your first specialist visit, you should bring a “toolkit” of your medical history ^[11][13]:

1. Genetic Test Results: If you have had genetic testing, bring the actual lab report ^[2].
2. Imaging on a Disc: Request the actual images (not just the written report) of any previous CT scans, MRIs, or echocardiograms ^[14][15].
3. Recent Lab Work: Bring your most recent Complete Blood Count (CBC) and Iron Panel (ferritin levels) ^[11][8].
4. Family History: Be prepared to discuss which relatives have symptoms like nosebleeds, anemia, or a history of stroke ^[2][13].

Vetting Your Local Doctors

If you cannot reach a CoE, use these questions to ensure your local doctor is prepared to handle HHT:

• “Are you familiar with the Curaçao Criteria for HHT?” ^[13]
• “Are you willing to consult with an expert at an HHT Center of Excellence if my case becomes complex?” ^[1]
• “What is your protocol for screening for ‘silent’ AVMs in the lungs and brain?” ^[3]