Living With HHT: Everyday Guidance for Patients and Families

Share this on:Copied!

Living with hereditary hemorrhagic telangiectasia (HHT) shapes your life in big and small ways. You notice things other people may not, like how often a nosebleed happens, when energy dips, or what plans need extra thought.

It can feel like a lot to manage sometimes.

The good news is that with the right information and routines, life with HHT can still feel steady, safe, and full. You can learn how to manage your symptoms, support your overall health, and stay prepared for the moments that matter most.

What Is HHT?

HHT — also called Osler-Weber-Rendu syndrome or Osler-Rendu-Weber syndrome — is a genetic disorder that affects the way your blood vessels develop.

Instead of forming strong, structured vessels, people with HHT develop fragile ones or larger, abnormal connections. These can appear in the nose, skin, lungs, liver, stomach, or brain.

Because these vessels are delicate, they can bleed more easily. This makes nosebleeds and anemia — when your body lacks enough healthy red blood cells to carry the oxygen it needs — more common. Most concerning are arteriovenous malformations, which are larger abnormal connections between arteries and veins. These can allow for stroke or brain abscess formation, as well as life-threatening rupture and bleeding.

Even though HHT is a lifelong disease, an early diagnosis and regular screenings can help prevent severe complications. But many people don’t realize they have HHT until nosebleeds become frequent or a family member receives a diagnosis. Others may have mild symptoms for years without knowing the cause.

Diagnosing HHT

Most doctors use the “Curaçao criteria” to diagnose HHT. This includes determining if you have:

• Arteriovenous malformations (AVMs) — Abnormal connections between arteries and veins in organs such as the lungs, liver, or brain.
• Family history — A first‑degree relative (parent, child, sibling) with HHT.
• Nosebleeds — Repeated nosebleeds over time.
• Telangiectasias — Small, widened blood vessels on your skin or inside your mouth.

If you meet one or more of these criteria, your doctor may diagnose HHT or recommend genetic testing.

Screening is a major part of diagnosis because AVMs can form in places you can’t see or feel. Your HHT care team may recommend:

• Blood tests — to monitor anemia
• Bubble echocardiogram or CT scan — To check for lung AVMs.
• Endoscopy — For suspected gastrointestinal (digestive) bleeding.
• MRI — To screen for brain AVMs.

Early screening helps prevent complications like stroke, severe bleeding, or infections related to untreated AVMs.

HHT family screening guidance

If you have HHT, your children have a 50% chance of inheriting it. Experts have linked genes that help guide blood vessel development to HHT.

HHT doesn’t skip generations. But since symptoms can look very different from one person to another, it sometimes seems that it does.

Genetic testing can confirm the diagnosis and guide screening for children and other family members. This can give your family clarity and help your doctor create the right monitoring plan.

How to Live with HHT Day to Day

With proper screening, treatment, and symptom management, many people live a normal life with HHT.

Living with HHT means paying attention to your body and building habits that protect fragile blood vessels. Nosebleeds are the most common sign of HHT, and many people also experience anemia from ongoing blood loss.

Simple routines can make a big difference:

• Don’t take any medications or herbal supplements unless your doctor approves them. (Some, like aspirin, certain antidepressants, and steroids, can increase bleeding risk.)
• Follow your care team’s screening plan for AVMs in the lungs, brain, and liver.
• Keep your nose moist with saline spray or a humidifier.
• Stay hydrated and use gentle skin care to protect areas where telangiectasias appear.
• Track your HHT nosebleeds and anemia symptoms to notice patterns or triggers.

Traveling safely with HHT

If you have HHT, travel is absolutely possible — with preparation. Because HHT can involve the lungs, brain, or digestive tract, planning ahead helps you stay safe and confident.

You can prepare for emergencies like heavy nosebleeds or anemia by:

• Carrying a copy of your medical summary, including your HHT diagnosis and any known AVMs.
• Knowing where the nearest hospital is at your destination.
• Packing a small nosebleed kit with saline spray, ointment, tissues, and medications.

If you have lung AVMs, talk with your doctor before flying. If you’re prone to anemia, ask how to monitor symptoms while away.

Exercising safely with HHT

Most people with HHT can exercise safely. Staying active supports heart health, energy, and emotional well‑being. Consider low‑impact, steady‑pace activities that help maintain strength and balance without heavy strain, such as:

• Easy cycling (stationary or outdoor).
• Light hiking.
• Light resistance training (bands, bodyweight, light weights).
• Pilates.
• Swimming or water walking.
• Walking.
• Yoga (avoid inverted poses if nosebleeds are an issue).

But doing exercise involving straining, heavy lifting, high impact, or risk of injury may not be ideal if you have a bleeding condition like HHT.

Always check with your HHT care team if you have AVMs in the lungs or brain. Ask your doctor to help you create a safe exercise plan that fits your health needs.

HHT Lifestyle Guidance

Living with HHT means managing HHT symptoms and paying attention to any changes.

Coping with anemia from HHT

Anemia is common because bleeding from your nose or digestive tract can lower iron levels. You can support your energy and well‑being by:

• Eating iron‑rich foods like beans, leafy greens, and fortified cereals.
• Following your doctor’s plan for iron replacement.
• Reporting symptoms like shortness of breath, dizziness, or rapid heartbeat.
• Resting when you feel fatigued.

Energy management

Fatigue is common when you’re dealing with anemia or frequent bleeding. You can support your energy by:

• Asking for help when you need it.
• Eating balanced meals.
• Prioritizing sleep.
• Staying hydrated.
• Taking breaks throughout the day.

Emotional well‑being

Living with a hereditary bleeding disorder can feel overwhelming. Many people find comfort in:

• Connecting with hereditary bleeding disorder support communities.
• Learning more about your condition so you feel empowered.
• Talking openly with family.
• Working with a counselor or therapist.

National organizations like Cure HHT and the National Organization for Rare Disorders (NORD) provide education and practical help. They can help you find peer networks, support groups, and community events where you can connect with others with bleeding disorders.

When to Seek Medical Attention for HHT

Seek medical attention right away if you have any of these symptoms that may signal bleeding in organs where AVMs can form:

• Black stools.
• Coughing up blood or vomiting blood.
• Severe headaches, seizures, or neurological changes.
• Sudden, severe nosebleeds that don’t stop.
• Trouble breathing.

Patients with known or suspected HHT should be evaluated at an HHT Center of Excellence, a distinction made by Cure HHT. This recognizes centers that provide coordinated care by specialists who are knowledgeable about screening, treating, and managing HHT. You can contact the HHT Center of Excellence at UPMC by calling 412-451-1874.

If you have been diagnosed with a lung AVM, UPMC has a dedicated Pulmonary AVM Program, led by Adam Fish, MD, to evaluate and create an efficient treatment plan for each patient. Call 412-647-5050 to schedule with the Pulmonary AVM Program.