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Chronic Nose Bleeds

None — Hereditary Hemorrhagic Telangiectasia

Hereditary hemorrhagic telangiectasia (HHT), also known as Osler Weber-Rendu syndrome, is a condition characterized by abnormalities of the blood vessels. Normally, the circulatory system contains three main types of blood vessels. The arteries carry oxygen rich tissues from the heart to the body. The veins carry deoxygenated blood from the body back to the lungs. In between the arteries and the veins are a network of tiny blood vessels, called capillaries. It's through the thin-walled capillaries that oxygen is released into the tissues and carbon dioxide and waste products are exchanged. In patients with HHT, some areas of blood vessels have no capillaries, allowing blood from the arteries to flow directly into the veins. Arterial blood flows under high pressure while venous blood flows under lower pressure. Normally, the capillaries act as a pressure buffer between the arteries and veins. When blood flows right into the veins, the extra force damages the veins near the connection site, causing them to bulge and become fragile. With enough force, the fragile vessels rupture and bleed. In HHT, bleeding can occur from abnormal vessels in many sites of the body, like the nose, skin, gastrointestinal tract, lungs, brain and spine.

HHT is a relatively rare condition. The HHT Foundation International estimates it affects about 1.2 million people around the world. Researches say HHT is hereditary and occurs in about one out of every 5,000 people. About 95 percent of people with HHT have recurrent nosebleeds, with most patients developing the symptoms by 21. The nosebleeds can be mild to severe and occur infrequently to daily.

Treating HHT Nosebleeds

Terence Davidson, M.D., Head & Neck Surgeon with the University of California San Diego, says over time, patients with HHT tend to have more frequent and severe nosebleeds, losing as much as one to two pints of blood at a time. They may need intravenous iron and emergency transfusions to replace the lost blood.

Controlling the bleeding can be difficult. Doctors may place packing in the nose to reduce blood loss. If that doesn't help, a laser may be used to coagulate blood and seal the leaking vessels. In septal dermoplasty, the mucous membrane lining the nose is replaced with a graft of skin. This is a permanent procedure to reduce the severity and frequency of nosebleeds. Davidson says, for the most severe cases that don't respond to treatment, doctors may recommend suturing the nose shut. Although this procedure works well, it's typically used only as a last resort option because patients lose their ability to smell and breathe through their nose.

Avastin for HHT Nosebleeds

A novel treatment being tested for severe or recurrent HHT-related nosebleeds is Avastin, a medication initially developed to treat colon cancer. The drug works by inhibiting the growth of new blood vessels. For patients with severe bleeding, the medication is given through an injection in the nose. Davidson explains an injection can be uncomfortable, so the procedure is done in an operating room while the patient is under anesthesia. He uses an endoscope (lighted viewing tube) to see inside the nose and deliver the injection to the area of bleeding. For mild cases of nosebleed, Avastin can be given in the form of a nasal spray. The nasal spray is given in the physician's office.

Davidson says Avastin injections work very well and reduce the risk of bleeding for at least a year. In some cases, the effect lasts for two or more years. By contrast, laser treatments last only about three to four months.

Currently, Avastin is being used off-label for HHT nosebleeds. The University of California San Diego is the only center in the U.S. testing the drug for this purpose. There are two ongoing studies. In the first study, patients receive laser treatment and an injection of Avastin. Participants in the second study will receive a topical Avastin spray. For information on Hereditary Hemorrhagic Telangiectasia: click here. There are a handful of treatment centers in the US that provide specialized care for patients with HHT. To see a list of the centers, click here.

For information about the Avastin studies, click here. For general information on nosebleeds:

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