Can hereditary hemorrhagic telangiectasia be prevented?

Although current treatment cannot stop telangiectasias or arteriovenous malformations (AVMs) from forming, many of the symptoms and complications associated with hereditary hemorrhagic telangiectasia (HHT) can be treated or prevented.

Is HHT life threatening?

HHT can be fatal if the AVM is in the patient’s brain, lungs or GI tract (stomach and intestines). AVMs in the GI tract do not cause pain or discomfort. Symptoms of GI bleeding are black or bloody stools and/or anemia. The anemia (low blood count) can then cause fatigue, shortness of breath, chest pain or dizziness.

Is hereditary hemorrhagic telangiectasia a bleeding disorder?

Hereditary hemorrhagic telangiectasia (HHT or Osler-Weber-Rendu syndrome) is an inherited disorder characterized by malformations of various blood vessels (vascular dysplasia), potentially resulting in bleeding (hemorrhaging) and shunting of blood.

How does hereditary hemorrhagic telangiectasia affect the body?

A person with HHT may form blood vessels without the capillaries (tiny blood vessels that pass blood from arteries to veins) that are usually present between arteries and veins. The space between an artery and a vein is often fragile and can burst and bleed much more easily than other blood vessels.

What is the life expectancy of someone with HHT?

Our data demonstrate that patients with HHT have a poorer survival compared with controls. Median age at death was 77 years in cases with HHT compared with 80 years in controls, a decrease of 3 years.

What foods to avoid when you have HHT?

Avoid certain foods. In some people, HHT nosebleeds are triggered when they consume blueberries, red wine, dark chocolate or spicy foods. You might want to keep a food diary to see if there’s any connection between what you eat and the severity of your nosebleeds.

Is HHT an autoimmune disorder?

HHT syndrome has been described in association with autoimmune disorders, such as Hashimoto thyroiditis, lupus erythematosus, vitiligo, anti-phospholipidic syndrome and pernicious anaemia.

Can you get disability for HHT?

In order to meet the listing requirements for Social Security disability benefits based on HHT, you must have bleeding severe enough to require three or more blood transfusions in the five month period before a decision is reached on your disability claim.

Can you take ibuprofen if you have HHT?

NSAIDS (nonsteroidal anti-inflammatory drugs) such as aspirin, ibuprofen (Motrin, Advil), celecoxib (Celebrex) and others are not recommended for HHT patients. NSAIDS are a drug class that reduce pain, decrease fever, prevent blood clots and decrease inflammation.

What is Osler Weber syndrome?

Persistent bleeding from the nose and the intestinal tract can result in severe iron deficiency anemia and poor quality of life. Also known as Osler-Weber-Rendu disease, hereditary hemorrhagic telangiectasia (HHT) is a genetic disorder that you inherit from your parents.

Do nosebleeds run in families?

Nosebleeds are often the earliest symptom of HHT. Since HHT is hereditary disease, nosebleeds run in HHT families.