Treating HHT with Focused, Supportive Care
TreatmentsTreatments 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.)
Commonly used treatments include self-help, laser therapy, septal dermoplasty, embolization, and surgery.
Self-helpSelf-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.
Laser therapyLaser therapy is offered for patients with persistent nosebleeds or telangiectases of the skin. The procedure uses a laser to seal the blood vessels near the telangiectases. Laser therapy can also be used to treat some abdominal AVMs.
Septal dermoplastySeptal dermoplasty is used occasionally in cases of severe nosebleeds. Septal dermoplasty is the permanent replacement of the thin lining of the nose (called the mucous membrane) with a skin graft.
EmbolizationEmbolization is an outpatient procedure with a high success rate for treating AVMs of the lungs and brain. Embolization prevents the flow of blood in the artery that supplies an AVM.
SurgerySurgery and stereotactic radiosurgery may be used to treat brain AVMs by using techniques that precisely restrict blood flow in targeted blood vessels.
Patient SupportAll 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 Hospital of 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 & The Medical College of Wisconsin HHT Program armed with vital information, important contacts and numerous resources including support groups.
Milwaukee HHT Regional Network Alliance Support GroupAs part of our comprehensive approach, we offer a support group for people with HHT. Visit our calendar of events and search for HHT.
The HHT Support Group provides a caring, safe, and supportive environment for individuals with HHT, their family members, and caregivers to come together to:
- Foster stronger links between individuals, the medical community, and resources
- Share experiences about living with HHT
- Learn from one another
- Support one another
- Advance awareness of HHT treatments and technologies
Walk-ins are welcome. To pre-register for the HHT support group or for additional information about the HHT Program, please email hhtRNA@froedterthealth.org.
Date: May 21, 2012
Online Editor(s): Richard Petre