HHT Treatment & Support

Currently, there is no cure for HHT. The condition is managed by treating and controlling symptoms, with the goal of improving quality of life and preventing complications. Regular monitoring and proactive care are essential. 

HHT can be life-threatening, particularly due to complications from arteriovenous malformations (AVMs) in critical organs such as the lungs, liver, or brain. With proper treatment and regular follow-up, however, most individuals can live healthy, active lives.

Treating Symptoms of HHT

Treatments to prevent HHT and related bleeding conditions such as AVMs do not yet exist, but symptoms can be treated as soon as they surface. (When bleeding involves small blood vessels, it is called telangiectasia. When larger blood vessels are involved, it is called an arteriovenous malformation or AVM.)

We work with you to create a plant to manage your HHT symptoms based on the severity of symptoms, the location of AVMs and your overall health. Typically, management starts with conservative options like self-help and progresses toward more invasive procedures as needed. We often use a multidisciplinary team approach.

Every patient is different, but all share a goal — to improve quality of life. Seeking evaluation and treatment at an HHT Center can help determine best treatment options. Preventing bleeding, anemia, and serious complications greatly contributes to better daily functioning.

Self-Help to Ease Symptoms of HHT

Self-help may ease the symptoms of nosebleeds caused by telangiectases. Humidifying a patient’s home or physical environment and using over-the-counter products to keep the mucous membrane of the nose moist may provide relief. This is best for mild symptoms. It improves comfort and reduces nosebleeds with minimal intervention.

Advanced Cautery Procedures

These procedures include laser treatment, electrocautery and coblation, and can fix telangiectasias, typically in the nose or on the skin and lips. Cautery procedures typically don't require a hospital stay and work to reduce moderate to severe nosebleeds or skin bleeding. 

Embolization

Embolization is a minimally invasive procedure used to treat AVMs in the lungs or brain by stopping blood flow to the AVM. The technique is best for high risk or symptomatic AVMs with few complications.

Surgery

Surgery and stereotactic radiosurgery may be used to treat brain AVMs by using techniques that precisely restrict blood flow in targeted blood vessels. Surgery is an option for large or dangerous AVMs. In some rare cases, it can cure the symptoms of HHT.

Patient Support

All HHT program specialists are well-educated and aware of what HHT is and what HHT symptoms, family concerns and life complications patients must cope with.

Since HHT is a genetic disease, a genetic counselor is available to explain to the patient exactly what that means, how DNA works and how HHT has been part of that patient’s family history. In addition, the genetic counselor and the multidisciplinary team of HHT experts are able to test family members that may be at risk for HHT. The team also works with Children’s Wisconsin physicians to test children for HHT.

Our HHT team in Milwaukee will help to coordinate care with the patient’s primary care physician. Patients receive a full report of all the tests and results they’ve received, a summary of the physicians’ findings and full details on their treatment plan. Patients leave the Froedtert & MCW HHT Program armed with vital information, important contacts and numerous resources including support groups.